The Evening of Life   /   Fall 2018   /    Thematic: The Evening of Life

Neglected in the House of Medicine

Justin Mutter

A dementia patient; Brett Gardner/Alamy Stock Photo.

Health care’s political economy exists only for the disease. To the system, the person with the disease remains in obscurity.

“The White Coats Are Coming,” he announced with a wry smile. A fitting title for his book, I thought, but then found myself looking down at my own white coat, wishing I hadn’t worn it to my clinic today. Noticing my discomfort, he added kindly, “Well, I’ll have to write a different…thingy…for you.” I breathed an inaudible sigh of relief, and smiled back. I was off the hook. Maybe. When Tom, as I’ll call him, said “thingy,” he meant “another chapter in my book,” but in the course of trying to speak, had been unable to find the right words. He was fighting a condition known as primary progressive aphasia, most likely attributable to an early stage of dementia. Though he was gradually losing command of his words, Tom had decided to write a book about his experience with the health care system. Not to be sidelined by his illness, he had set a goal of finishing the  book before further decline in language made it impossible. He had a story to tell.

It is a familiar one. Faced with complex cognitive and psychological symptoms, and increasingly unable to work, Tom had hopped from doctor to doctor, white coat to white coat. Tests were ordered. Lab samples were drawn, again and again. Neurological imaging was obtained, and even a spinal tap was performed. All of this was inconclusive. Tom’s clinical signs and symptoms were somewhat atypical. Neurologists thoughtthe underlying cause was psychiatric; psychiatrists thought it was neurological. Because no one would offer him a clear diagnosis, he couldn’t qualify for disability services. At sixty-two—just when he had expected to be winding down a career and finalizing retirement plans—he had instead found himself jobless, plagued by economic hardship. Notyet Medicare eligible, he had been paying an extraordinary monthly sum for two years to maintain his health insurance under the Consolidated Omnibus Reconciliation Act (better known to those who have had to seek recourse to it by its distressing acronym, COBRA). By the time I met him, Tom hadn’t been back to see a doctor in nearly a year. Exhausted from being guided in different directions, his financial resources drained by a mountain of medical bills, he had decided to get off the medical map. But when his disorder progressed, he warily returned to the house of medicine.

An explanation for Tom’s prototypical narrative can be found in Charles Rosenberg’s well-known 2002 essay “The Tyranny of Diagnosis.”11xCharles E. Rosenberg, “The Tyranny of Diagnosis: Specific Entities and Individual Experience,” Milbank Quarterly 80 (2002): 237–60. Though primarily a social and cultural historian, Rosenberg purposefully chose a set of political metaphors for his account of diagnosis, noting that he could just have easily called the essay “Diagnosis Mediates an Invisible Revolution.” In Rosenberg’s view, diagnosis has become the house of medicine’s constitution, its principles and practices so immutable and inalienable as to be nearly imperceptible to the general public.

Among those with an interest in the history of medicine, there is an ongoing chicken-and-egg debate about the relationship between concepts and systems. Does the centrality of diagnosis in medical epistemology lead to a technology-driven political economy of testing and therapeutic intervention? In more practical terms, is the conceptual process that Rosenberg describes responsible for $150 million investments in proton-beam radiation for a tiny fraction of rare cancers? Or, conversely, does a capitalist medical-industrial complex directly engineer diagnosis at the center, itself defining and refining medical epistemology and the formal classification of diseases?

From the perspective of many older persons trying to navigate the American health care system, both sides of the argument are germane. Tom does not distinguish between the diagnostic preoccupations of his health care providers and the system that augments those preoccupations. Rather, he experiences it all as a comprehensive mess in which he, as a person, is systematically neglected, in concept and in practice. Caught in a web of expansive diagnostic investigation, Tom finds that his immediate care needs are subservient to what we might call the political economy of diagnosis. While Rosenberg’s essay focuses predominantly on the conceptual implications of diagnosis—another feature of the global “framing of disease”22xCharles E. Rosenberg. “Framing Disease: Illness, Society, and History,” in Framing Disease: Studies in Cultural History, ed. Charles E. Rosenberg and Janet Golden (New Brunswick, NJ: Rutgers University Press, 1992), xii–xxvi.—he begins to picture how this translates into practice: An individual “becomes visible to the health care system when diagnosed with an acute ailment but then returns to invisibility once that episode has been managed.” Healthcare’s political economy exists only for the disease. To the system, the person with the disease remains in obscurity.

Despite several merits, chiefly its ability to harness extraordinary technological power, the political economy of diagnosis is deeply flawed. Nowhere are its flaws more apparent than in the care of aging Americans, many of whom, like Tom, are struggling with advanced chronic illnesses. The mediocrity of our care of older adults derives from two closely connected historical developments. The first is that, since its inception in 1965, Medicare’s fiscal organization has relied almost exclusively on the politicaleconomy of diagnosis. The second is that this reliance has, ironically, largely ignoredthe evolving science of aging. The result is an object lesson in futility: an American health care system that, despite its remarkable technological capacities, achieves poor outcomes for older adults.

A New Form of Currency

To understand how this came to be, we must first understand the development of Medicare. At its statutory and administrative core, Medicare has been, and remains, a political economy of diagnosis. Over time, benefits have been narrowly construed as being associated with specific diseases. This reductionist turn has put Medicare payment policy at odds with the predicament of many older adults in the evening of their lives, precisely because the diagnostic imperative is incapable of attending to the health of the whole person. In short, Medicare is both impersonal and unscientific.

Medicare has, of course, been the subject of widespread policy debate ever since it was signed into law as an amendment to the Social Security Act in 1965. But in 1983, the mood among policymakers and health care regulators across the nation was one of cautious optimism. In April of that year, President Ronald Reagan signed into law H.R. 1900 (Public Law 98-21). Unlike other major pieces of legislation involving America’s health care system, Public Law 98-21 did not carry a catchy title proclaiming its commitment to “care” or to “health.” It was simply known as “The Social Security Amendments of 1983,” and its primary statutory focus was on the fiscal solvency ofSocial Security payments in a time of economic recession. As political scientist Rick Mayes describes the moment, “The most significant change in health policy since Medicare and Medicaid’s passage in 1965 went virtually unnoticed by the general public.”33xRick Mayes, “The Origins, Development, and Passage of Medicare’s Revolutionary Prospective Payment System,” Journal of the History of Medicine and Allied Sciences 62 (2006): 21.

The amendments established a novel approach to Medicare payment known as the prospective payment system (PPS). Previously, Medicare—which was, from the outset, oriented primarily toward taxpayer funding for hospital services—had paid hospital systems retrospectively. Payments were organized, quite literally and straightforwardly, through a “cost plus” system, with disbursements covering a combination of the “reasonable” amount as designated by provider groups plus the cost of nursing care and hospital capital expenses.44xKaren Davis, Gerald Anderson, and Earl Steinberg, “Diagnosis Related Group Prospective Payment: Implications for Health Care and Medical Technology,” Health Policy 4 (1984): 139–147. In its earliest phase, Medicare ceded authority to physicians to determine which services were “reasonable and necessary,” as the statute read, and what they should cost. Physicians rapidly became the “bedside bureaucrats” of government-funded health care for older adults.55xNicholas Bagley, “Bedside Bureaucrats: Why Medicare Reform Hasn’t Worked,” Georgetown Law Journal 101, no. 3 (2013): 519–80. Not surprisingly, the cost of providing hospital care exploded, often rising three and four times the rate of inflation annually.

The PPS was a dramatic shift in payment policy, tying all hospital payments to “diagnosis-related groups” (DRGs). This system remains in effect today, and has, to varying degrees, significantly influenced Medicare fiscal policy for outpatient care as well as private insurance schemes. Effectively, rather than pay whatever costs hospitals happened to incur on a per diem basis, in 1983 the entity that runs Medicare, now known as the Centers for Medicare and Medicaid Services, resolved to pay expected, universal charges for specific diagnoses or types of diagnoses. The disease entity became the tool for financial standardization and bureaucratization of claims data across the nation. In other words, the diagnostic classification of diseases was now the official currency for the political economy of health care for older adults.

There is continuing debate over the degree to which the PPS and DRGs have successfully controlled costs; nearly a decade after PPS implementation, hospital costs per person were still more than double what they were at the inception of the rule.66xStuart H. Altman and Donald A. Young, “A Decade of Medicare’s Prospective Payment Program— Success or Failure?” Journal of American Health Policy (March–April 1993): 11–19. Yet for all of the scholarly discussion of its macroeconomic impact, the consequences of the PPS for the entire political economy of Medicare—as experienced by its beneficiaries— have largely been ignored. This neglect is due in part to a common half-truth narrative about the history of Medicare.77xJonathan Oberlander, The Political Life of Medicare (Chicago, IL: University of Chicago Press, 2003), 157. It goes something like this: The establishment of Medicare in 1965 was based on a “politics of consensus,” in which, after decades of inertia, a tenuous compromise between policymakers and shareholders of the nascent medical-industrial complex allowed insurance coverage for the geriatric population to move forward.

Cost Shifting before Cost Saving

Yet because this compromise was insecure, it had to be renegotiated over time. The philosophy behind sustaining it was “incrementalism,” what political scientist Lawrence Jacobs celebrates as a peculiarly American “modesty and self-restraint borne out of respect for enduring structural limitations facing health reform.”88xLawrence R. Jacobs, “The Medicare Approach: Political Choice and American Institutions,” Journal of Health Politics, Policy and Law 32 (2007): 184 An incrementalist approach to Medicare has, over several decades, led to gradually increasing benefits tempered by costcontrol measures, in a methodical process like the oscillation of a pendulum. In this account, a substantial shift in payment policy like that represented by the PPS—albeit one that retained a powerful role for medical providers to set the terms for pricing—was an unavoidable rung on the health policy ladder that Americans have been climbing since the New Deal.

The problem with the narrative of incremental inevitability is that it neglects at least two critical features of the decision to link Medicare fiscal policy to DRGs. First, there were available alternatives. As evidenced by federal interest in capitation and managed care in the 1990s, per diem payments did not have to be linked primarily to specific diagnoses. In fact, at the time of its enactment, the PPS was not even well studied as a viable policy option. Having originated as a means for data collection, it had only been briefly tested as fiscal policy in one state (New Jersey), and the first major research paper to assess its impact in that state would not be published until 1986. The results were underwhelming: “It is a system,” the authors concluded, “that invites cost shifting before cost saving.”99xWilliam S. Hsiao et al., “Lessons of the New Jersey DRG Payment System,” Health Affairs (Project Hope) 5 (1986): 42. Viewed in its proper historical context, the PPS was more a policy fad than a carefully considered, gradualistic strategy.

Second, while the story of incrementalist fiscal policy in Medicare pays close attention to political discourse, it overlooks the broader economic changes resulting from incremental reform, changes that had a dramatic impact on older adults’ experience of both healthy and unhealthy aging. While the policy may have been gradualistic, its effects were anything but gradual. Medicare was a powerful catalyst for medical specialization in America, as well as for the rapid expansion of biotechnology and biomedical research.1010xRosemary Stevens, American Medicine and the Public Interest: A History of Specialization (Berkeley, CA: University of California Press, 1998). This was in no small part due to Medicare’s financial support for care and capital expenses generated out of hospitals. Medicare payments alone may have generated over a third of national hospital growth in the program’s early years.1111xAmy Finkelstein, “The Aggregate Effects of Health Insurance: Evidence from the Introduction of Medicare,” The Quarterly Journal of Economics 122 (2007): 1–37. Acute, episodic, and high-technology medicine based in hospitals rapidly became the center of activity within the American health care system. What’s more, the advent of DRGs meant that these activities themselves revolved around an axis of diagnosis. As Rosenberg notes at the end of his history of American hospitals, this model has meant that “disease does not exist unless it can be coded.”1212xCharles E. Rosenberg, The Care of Strangers: The Rise of America’s Hospital System (Baltimore, MD: Johns Hopkins University Press, 1995). First published 1987. The history of Medicare fiscal policy shows that diagnostic coding is the mechanism by which diseases are recognized, and therefore paid for, by the health care system. Diagnosis is not just a professional and social act; it is a financial one.

Medicare’s use of diagnoses as currency, however, has engendered a conflict that is often underappreciated. It has pitted older adults’ financial security against their health. While an older adult living with multiple advanced illnesses may take comfort in Medicare’s commitment to covering novel treatments, hospitalizations, and other highly specialized care, it is unclear whether these interventions translate into salutary, person-centered outcomes. Health economists Amy Finkelstein and Robin McKnight, for example, maintain that while out-of-pocket spending on health care among older adults significantly decreased during Medicare’s first decade, insurance benefits had no measurable impact on mortality during that time.1313xAmy Finkelstein and Robin McKnight, “What Did Medicare Do? The Initial Impact of Medicare on Mortality and Out of Pocket Medical Spending,” Journal of Public Economics 92 (2008): 1644–69.

While these economic analyses remain matters of debate, the fact that Medicare’s relative efficacy is under scrutiny should come as no surprise. During its fifty-two-year history, decisions about insurance benefits have been driven primarily by fiscal concerns, and executed under the diagnostic imperative. This is Medicare’s core weakness. The political economy of diagnosis disseminated through Medicare benefits is incommensurate, in many ways, with the health needs of older adults, particularly older adults with multiple biopsychosocial concerns. The evolution of this trend in American health care reflects a subtype of medicalization distinct from Peter Conrad’s classic formulation, according to which “medical jurisdiction” widens its hold on social problems previously considered to be nonmedical.”1414xPeter Conrad, The Medicalization of Society: On the Transformation of Human Conditions into Treatable Disorders (Baltimore, MD: Johns Hopkins University Press, 2007). Health insurance benefits can hardly be characterized as “nonmedical” problems. Yet when health care services must be tied to specific diagnoses in order for providers or recipients to be reimbursed, human health is no longer an indivisible, wholeperson phenomenon. The regime of diagnosis is thoroughly reductionist, opting to build systems of fractured transactions rather than aim for a unifying mission of well-being. This is a kind of medicalization by means of biomedical atomization, a social process that recasts human health as a mere sum of its parts.

Understanding the Science of Aging

Biomedical atomization works well, and in some cases superbly, for several aspects of modern health care. Individual diseases can be identified and cured or effectively controlled. Targeted technologies and pharmacotherapies can alleviate symptoms and suffering. Yet the more complex one’s problems and care, the less efficacious the political economy of diagnosis becomes. Tom’s story is a case in point. His experiences are also typical of a widening gap between the science of caring for older adults and the health care services actually provided to them.

There are two core advances in the science of aging that illuminate this gap. The firstderives from clinical research in geriatric medicine, and the second from health policy research in care systems for older adults. The first advance we might call the functional imperative. Although its earliest formulation dates back to Ignatz Leo Nascher’s classic 1914 work Geriatrics: The Diseases of Old Age and Their Treatment, the functional imperative has seen expansive elucidation in recent decades. We now understand that in order to care successfully for older adults with chronic illnesses, we must work to heal the whole person before we can treat specific diseases. Healing the whole person necessarily requires a focus on global function: Are older persons able to function well in their current environment? What limitations do they have? What detriments to quality of life and well-being exist, and how might we overcome them? The scientific pursuit of these questions has grown into arguably the most important organizing concept in geriatric social and scientific medicine in the last two decades: frailty syndrome. One should note that there is an important difference between a geriatric syndrome and the commonplace definition of a syndrome used in biomedical education. Students in the health professions are taught that a “syndrome” is a collection of symptoms that can be traced to a single cause. For example, trainees learn about Sjögren’s syndrome, which is attributable to a distinct autoimmune process, or Marfan’s syndrome, which is caused by a rare genetic disorder. In the care of older adults, however, a syndrome is something quite different. A geriatric syndrome has both multiple causes and complex effects, and therefore must be approached with attention to the whole person.

Frailty syndrome in older adults is a dynamic condition with many possible causes both inside and outside the human body. A helpful working definition characterizes frailty as a condition of increased vulnerability to stressors, whether biological, psychological, or socioeconomic, due to a “decline in physiologic reserve and function.”1515xXujiao Chen, Genxiang Mao, and Sean X. Leng, “Frailty Syndrome: An Overview,” Clinical Interventions in Aging 9 (2014): 433. This may or may not be related to processes of normal aging. We can think of functional assessment of older adults as a unique set of glasses we put on to be able to clearly view frailty along its spectrum. Where one falls along this spectrum depends on relative vulnerability versus resilience in response to stressors. The critical point about frailty syndrome is that it is impossible to approach it with a reductionist lens. Function is complex, broad, and dynamic. It requires consideration of one’s environment, one’s resources, and one’s health concerns.

To illustrate the importance of frailty and function, and to connect this to the second major advance in the science of aging, consider the story of an older adult I’ll call Charlotte. Eighty years old, Charlotte lives alone, her husband having died five years ago. She has family nearby who visit frequently, but because poor vision prevents her from driving, she spends most of her time at home by herself. She loves her home, where she has lived for fifty years, and is an avid consumer of books and music. She has multiple health concerns, including severe heart problems, moderate kidney problems, arthritis, and depression. She has Medicare for insurance and historically had a middle-class income, but neither she nor her husband was able to save much for retirement. She takes fifteen different prescription medications and sees five different medical specialists regularly. Often lightheaded and consequently afraid of falling, she also requires assistance with housework because of her breathing difficulties and with grocery shopping because of her inadequate vision.

Because of her functional difficulties, which come from a variety of causes, Charlottehas mild to moderate frailty syndrome. This makes her more vulnerable to certain stressors than some others her age. For instance, with her multiple medications, difficulty walking, and lightheadedness, she is in danger of falling and breaking a hip. Because of her frailty and the fragmentation of her care across many medical providers, Charlotte is at high risk for further decline in function and quality of life. This is one of the most important insights from geriatric research into frailty: More than any single disease or condition, frailty syndrome places older adults in jeopardy of early death, extensive disability, increased dependence on health care, and escalating medical expenditures.1616xRebecca S. Crow et al., “Mortality Risk along the Frailty Spectrum: Data from the National Health and Nutrition Examination Survey 1999 to 2004,” Journal of the American Geriatrics Society 66 (2018): 496–502.

Because frailty can be dynamic, Charlotte’s goal is to receive comprehensive services that can improve her functional capacity. And in fact, her goal is remarkably consistent with advances in the study of which medical programs are best for older adults, my second point. Over the last few decades, research has consistently shown that programs and services that aim to enhance global function and reduce frailty—rather than simply address individual diagnoses—can dramatically outperform the status quo. Yet there is no pill or procedure to treat frailty syndrome. Just as frailty’s causes are manifold, so too must be the interventions to address it. What is striking about services that provide these interventions is that they at once improve health outcomes and reduce health expenditures. A recent demonstration program in Baltimore, for example, employed occupational therapists, nurses, and “handymen” to work together with low-income older adults to achieve their functional goals. This program rapidly became the most cost-saving projectin the history of federal insurance coverage, nearly halving expenditures over a severalmonth period while augmenting participants’ health. Similarly, small home-based care programs focused on holistic care for frail older adults have far outpaced large technocratic policy schemes like accountable care organizations in cost-effectiveness and care achievements.1717xSarah L. Szanton et al., “Medicaid Cost Savings of a Preventive Home Visit Program for Disabled Older Adults,” Journal of the American Geriatric Society 66, no. 3 (2018): 614-20, doi:10.1111/jgs.15143. Sarah L. Szanton et al., “Home-Based Care Program Reduces Disability and Promotes Aging in Place,” Health Affairs 35 (2017): 1558–63. James Rotenberg et al., “Home‐Based Primary Care: Beyond Extension of the Independence at Home Demonstration,” Journal of the American Geriatrics Society 66 (2018): 812–17.

Yet Medicare’s political economy of diagnosis rarely allows for these services. The two programs cited above, for instance, were financed in the short term in just a few cities by means of temporary grants outside the realm of traditional Medicare benefits. What Charlotte would welcome most urgently is this kind of comprehensive care—aimed at advancing her overall function—provided to her in her home. But that kind of service is difficult, if not impossible, to administer under the fiscal terms of our usual diagnosis-centric health care regime.

Not surprisingly, because this regime fails to close the gap between the science of aging and services that older adults most need and desire, health outcomes for many older persons are poor. Consider those living with dementia, which is frequently accompanied by frailty syndrome. Health care costs for persons with dementia in the last five years of life come to around $300,000, nearly double that for people living with cancer or heart problems.1818xAmy S. Kelley et al., “The Burden of Health Care Costs for Patients with Dementia in the Last Five Years of Life,” Annals of Internal Medicine 163, no. 10 (2015): 729–36. Despite these tremendous expenditures, quality of care and overall health outcomes for persons living with dementia are mediocre at best, largely because our diagnostic regime is incapable of conceptualizing frailty, much less responding appropriately to it. There is no DRG for this condition. Advanced frailty is now even explicitly disallowed as an admitting diagnosis for Medicare hospice services.1919xVyjeyanthi S. Periyakoil, “Frailty as a Terminal Illness,” American Family Physician 88, no. 6 (2013): 363–68. And without a concept, much less a code, it barely exists in the eyes of Medicare payment policy.

Prognosis in Place of Diagnosis

The political economy of diagnosis is the house of medicine that we have built. Our current predicament in the care of older adults is not a problem of demography. It is not a side effect of industrial capitalism. It is not a byproduct of cultural ageism. While these phenomena are no doubt contributory, the fundamental problem with this house, beginning with its foundation, is its design. This design never included a positive, comprehensive vision of health for older adults approaching the end of their lives. With such an incomplete design, it is no surprise that our house is now so ill-suited to those who enter it.

Since 1965, Medicare has been a fiscal program. It is not a health program for older adults. In view of the widening gap between the science of aging and the technologies of medical care to which Medicare beneficiaries have access, the tyranny of diagnosis has greatly complicated the lives of older adults. But it doesn’t have to be this way. The examples of innovative, person-centered programs for older adults I have discussed prove the contrary. The science of aging and geriatric health policy shows unequivocally that our efforts can succeed if they are buttressed by a person-centered architecture.

It is not too difficult to imagine a health system for older adults that revolves around something other than diagnosis. We might call this a political economy of prognosis. If diagnosis asks, “What does this person have?” then prognosis asks something quite different: “In view of the whole person—health, illness, vulnerabilities, and social supports—how is this person doing, what is their probable course, and how can we alter that course for the better?”

As a thought experiment, consider what might have occurred if Tom had brought his concerns to a clinic governed by the political economy of prognosis. Tom, we recall, suffers from an early form of dementia that significantly alters his language, a development that has, in turn, dramatically affected his functional capacities. Under a prognostic regime, Tom’s health care provider would be focused not on diagnostic codes but on how the symptoms of his illness were altering his health trajectory. Certainly, his provider would have made use of reasonable diagnostic technologies in order to assess the possible causes of his concerns, but Tom would not have been referred, and re-referred, to multiple specialists, seeking an “answer” for the better part of two years. Rather, because the responsibility of the provider would be to assist with Tom’s prognosis as a whole person, a provisional diagnosis would likely have been offered. Due to his rapidly progressive functional difficulties, and because diagnosis would not have been the key unlocking all benefits, Tom would have easily qualified for disability services, and would not have seen his life’s savings depleted by years of COBRA payments and medical bills. Tom would have received all he ever wanted from a health system: guidance and support. Knowing that his condition was incurable—but quite treatable—Tom would have received person-centered care in his home as his illness evolved. Perhaps he would have even had caregiver assistance to accomplish his primary goal of writing a book. Perhaps he would not have decided to title his book The White Coats Are Coming, but The White Coats Came—and Went. All of this care would have been consistent with the best of the science of aging with advanced illness, and, moreover, would have been considerably less expensive to provide than the medicalized benefits offered in the political economy of diagnosis.

All of this is easy to imagine because it human and humane; it is what most of us would want for ourselves and for our loved ones. Of course, just because it is easy to imagine does not mean it is easy to build; nonetheless, a political economy of prognosis would certainly be no more difficult to construct than was our political economy of diagnosis. We just have to collectively commit to its architecture. The good news is that this is already happening in many pockets of innovation around the United States. The task is to move it from pockets out into the open, where it will be accessible to all.