The biopolitics of security now administers the threshold of life/death: . . . in particular . . . the prolonged forestalling of death.
—Michael Dillon and Luis Lobo-Guerrero, “Biopolitics of Security in the 21st Century: An Introduction”
The surge of population growth in those aged sixty-five years and older represents “one of the most significant demographic trends in the history of the United States.”1 While this increase in life expectancy might be seen as reason to celebrate, it has also coincided with a rise in the affirmation to secure the life of the aging subject, indeed, to secure against aging and senescence. The word security stems from the Latin securitas, deconstructed as sine curae, “without troubles or cares.” In the context of the aging process, to “secure” refers to safe-guarding, protecting, and fortifying individuals against what are seen as the ravages of old age. Aging/old age has long been associated with burden, pathology, decline, dependency, disability, and potentially living in a state that is death-adjacent. Additionally, as Michel Foucault has argued, aging is equated with the declining productivity of individuals who, “because of their age, fall out of the field of capacity, of activity.”2 Individual declining productivity is, in turn, tethered to ideas of fiscal drain and national decay, as evident in the World Bank’s 1994 declaration that a “crisis” in aging “would have a catastrophic effect on productivity growth.”3 As Melinda Cooper has noted, old age is consequently viewed as a wasting or degeneration of productive life.4 The “problem of old age” is thus a security problematic for biopolitics.5 In contemporary biocultures of aging, a proliferation of techniques, technologies, and practices seek to promote and regulate life in the face of inevitable senescence; these efforts secure the life of the aging subject and amplify the individual’s capacity to live more and to age well.6
This chapter examines the affirmation to secure found in national and individual efforts to ward against aging in light of biopolitical and disciplinary efforts to maximize “third age.” As a descriptor, third age simultaneously denotes a power/knowledge relation, a discourse, and a qualitative rather than chronological “stage of life.” The concept of third age was first advanced by Peter Laslett to name a life phase/stage in which older individuals are able to partake in an active, independent, personally fulfilling, healthy life after the constraints of work and child-rearing.7 Third age only terminates with fourth age, which is marked by deep old age, frailty, and dependence on others. The concept of third age draws on a model first introduced by Robert Havighurst in a 1961 article for the Gerontologist and later popularized in the seminal 1987 piece “Human Aging: Usual and Successful” by physician John Rowe and psychologist Robert Kahn. The latter proposed a distinction between “usual” aging (marked by decline and loss) and “successful aging,” characterized by avoidance of disease and disability, maintenance of cognitive function, and social engagement.8 This biomedical-psycho-social model of aging well subsequently became a guiding epistemology in gerontology, also appearing under terms such as productive aging, healthy aging, active aging, and vital aging, among others. Evident not only in biomedicine, this model informs psychological, public health, and general societal narratives around aging. It is central in biocultures of aging: as a discourse, third age/successful aging is “an amalgam of textual and visual messages that appear and circulate in all kinds of public spaces, including but not limited to, the media, policy documents, academic literature, and healthcare organizations.”9
In the first part of this chapter, we examine various efforts to secure successful aging or “aging well” that, we argue, ostensibly enable individuals to achieve—and maintain themselves within the category of—third age. We specifically focus on the promotion of longevity, independent living, and functional aging—particularly the way these intersect with and condition broader societal understandings of older age and the very experience of aging in U.S. society. Importantly, we show that while these forms of governance pursue the life enhancement of aging subjects, they are regulatory and prescriptive, and they intersect with the governance rationalities of late liberalism. They solidify individualist notions of personhood and emphasize independence and the “need to stay an active producer of a positive health status rather than being a passive consumer of health care.”10
Within this broader focus on securing aging well, we shift to analyzing biofinancial security mechanisms, namely, metrics associated with global health economics that have been adopted in the United States. Such metrics are used to assess the health and age-impaired states of the population as scientific and economic “problems,” to identify where funding should be directed, what health interventions should be made, and how resources should be allocated. The accompanying health economic strategies seek to preempt the economic burden of an aging population—to secure against decline and old age. However, we argue that, similar to the promotion of third age, the biofinancialization of aging populations seemingly suggests the maintenance of life but in fact exacts costs that imperil lives.
In the second part of the chapter, we consider how decline is governed. Specifically, we focus on the biomedical promotion of “more life at any cost” for those who can be said to be on the brink of fourth age. Looking to the range of biomedical interventions that seek to secure the lives of ailing older individuals, we examine how dominant logics of biocultures of aging structure understandings of “what should be done” for those nearing death and the implications of the affirmation to secure in ever-later and deep old age. Following this, we address the “biomedical aftermath”—how the affirmation to secure aging subjects within the biomedical arena is conditioned by practices of “deadly care” within the broader political economy of institutionalizing elders in the United States. We explore how these factors actually delimit caring for those in age-related decline within the biomedical sphere and relegate infirm older individuals to nursing homes and hospice care. Here we consider how such sites function as the “shadowlands” of aging and actually work against the “make live” principle of biopolitics. Concluding the chapter, we ask, what alternative biocultures of aging might exist or be imagined to reaffirm aging based on more positive understandings of dependency in older age, interrelatedness between the aged and other members of society, and vulnerability?
Securing “Aging Well”
A paradoxical discourse of aging as both burden and opportunity dominates policy and public culture. With projections of the number of Americans aged sixty-five and older to double by 2030, policies aimed at the problems of aging at the population level couch health in economic terms and entreat individuals to manage their own existences.11 Third age discourse emphasizes new consumer markets and the “active effort of individuals to shape their experience of ageing in such a way that it reduces demands or dependency upon public systems of provision.”12 Biocultures of aging thus entail a variety of mechanisms that “secure life”—against aging, decline, and unproductivity—and enlist new forms of governance concerning how to age well. We examine here a few key everyday forms of governmentality that support third age discourse and secure aging: first, the interrelated promotion of longevity, independent living, and functional aging, and second, biofinancializing old age—reducing life to a funding problem through complex economic thinking—to secure against the cost of old age. While by no means an exhaustive account of the dynamic biocultural arena of aging, these cases map what kinds of aging are encouraged, how that aging is organized, and the limitations and dangers of this governing.13
Longevity, Independent Living, and Functional Aging
The pursuit of longevity is central to the discourse of third age and entails securing the productivity of aging. By maintaining productivity in various forms and expressions, the idea is that people will live longer and healthier lives: they will age well and enjoy finer lives. While the goal of making people live longer and age better is clearly laudable and not one that should be dismissed, the way that longevity is defined and pursued can be highly disciplinary and often detrimental to the elderly and anyone aging more broadly—with particularly deleterious consequences for people whose lives do not align with normative expectations of independence, agency, bodily autonomy, and constant activity.14
In U.S. biocultures of aging, bodies are disciplined to manage aging through activities that secure dependency-free life expectancy.15 Sharon R. Kaufman explains: “the activities that constitute longevity making, like so many other socio-medical practices, constitute a site for the governing of life and the emergence of new forms of ethical comportment and social participation. Those activities . . . also lie at the heart of debates about health care rationing and reform.”16 In other words, longevity is not merely an innocent quest for “more life”: it is a normative project of not being a burden on society and securing productivity through reflexive, often obligatory self-care practices. Older people are encouraged to be active, mobile, autonomous, experimental, networked, and consumer oriented—with the goals of wellness and visible inclusion in public life.17 Courtney Everts Mykytyn characterizes this as “a push to infuse popular representations and experiences of aging with notions of creativity, leisure, wisdom, and productivity . . . which create[s] a moral imperative for older individuals to both remain engaged and contribute to society.”18 Lifelong learning opportunities (online professional programs, university extension courses, etc.) are seen as an economic imperative and opportunity to meet the developmental needs of older people through intellectual and creative engagement. Senior employment and volunteer work additionally support the idea that middle age and up is a time for self-discovery and productivity. For example, Encore.org, an online platform for redirecting the skills and experience of those in midlife toward “second acts for the greater good,” challenges the idea that aging is a problem by advancing a new narrative for later life as “encore life”—characterized by individual renewal and social impact.19 Another organization, ReServe, advertises the goal of establishing one hundred thousand “reservists” by 2030, referring to individuals over fifty-five that the organization matches with nonprofits to help social causes.20
Many of these programs understand successful aging to be an ongoing achievement of the self—as a project of discovery and well-being—that involves the active consumption of health care and maintaining one’s productivity and personhood until the moment of death.21 While these are admirable goals that can benefit one’s physical health, “activity” serves as a panacea for political problems mounted by state disinvestment in health care, pensions, and other entitlements for the elderly. As the population grows old, successful aging means “being a busy body.”22 Longevity effectively becomes an ideological project of securing a lifelong state of consumer-oriented adulthood through self-responsibility and virtuous activity. Regardless of the personal feelings of an older person toward her work or voluntary contributions to society, seniors are interpellated in an ageist culture that positions them as a burden on society. Moreover, the volunteer economy of the elderly rests on class position: many Americans have or can expect little to no retirement; retirement has become a privilege rather than a basic right of old age. Senior volunteering and encore careers may not be within reach for people who must work longer before retiring—or cannot retire—and who take on expanding responsibilities for informal care work, particularly women. There are also ethical and equity concerns about enlisting seniors in auxiliary support services for an increasingly gutted public sector.
Independent living is also a key component of third age discourse. In the broadest sense, the goal of independent living is tethered to basic ideas about what it means to be an individual—such as the ability to be autonomous and capable of directing your own life. In the spirit of such ideas, and especially for financially mobile and retirement-abled persons, an aggressive entrepreneurial “Aging 2.0” urban market promotes senior lifestyles, housing, medical care, everyday products, and financial goods that allegedly secure independent lifestyles. Campaigns about “aging in place,” in particular, promise longevity and autonomy linked to location and remaining at home, tying successful aging to livability indices and urban metrics.23 For example, “Best Cities for Successful Aging” rankings assess how metropolitan areas “enable people to age independently and productively, with security and good health,” using a “livability” rubric that includes community engagement and wellness, coordinated with health care access, educational and financial opportunities, transportation, and convenience.24 An expanding industry of smart home technologies advertises dependency-free adult living—with the competence and fitness to conduct daily life. Intelligent homes equipped with wireless communications, infotechnologies, and infrastructural features geared to the aging promise independence by converting domestic space into health-monitoring and caregiving spaces.25 Historically, home health care has entailed nurses and caregivers traveling to a patient’s home several times a week for monitoring and treatment, but smart home technology supports varying degrees of “telecare,” such as long-distance monitoring of patient blood pressure, heart rate, and other vital signs and remote communication with health providers and family/community caregivers. Remote care might entail body-worn sensors that measure health data, monitoring systems that manage physiological data and activities in the home, and/or varying levels of medical emergency response and fall detection.26
Advocates of telecare/telehealth contend that such technologies “will reduce hospital readmission, give patients greater independence, and improve health, by allowing senior citizens to live at home longer prior to or instead of requiring nursing home care.”27 The combination of smart home with remote care invites the biomedical gaze within the home and body in new and intensified ways via myriad sensors and other ambient assisted living technologies. Stealth Health, for instance, claims that “high-fidelity data” are gathered and analyzed continuously via hidden sensors that “monitor the human body from a distance, never making contact and without maintenance.”28 Everyday home furnishings and appliances have been developed with motion sensors, digital radars, video monitoring, and temperature and light sensors to assess health and wellness. Blankets with vital signs sensors track how one sleeps; carpets with RFID technology monitor motion in the home environment to secure an established routine. Still other home technologies promise independent living through mobile technologies and social media applications that medicalize routine activities and coordinate companionship with medical compliance. For example, Reminder Rosie is a personalized, voice-controlled reminder system designed to assist older adults with memory loss. Equipped with a hands-free “senior-friendly clock interface,” the system sends reminders about medications, appointments, and everyday tasks to “maximize independence, provide personalized care, relieve caregiver stress, [and] sustain medical adherence.”29 Products such as Pill Pets dispense medication through home companion robots, endeavoring to foster obedience and medical adherence through the emotional bond between the aging person and a pet.30 The care coach service GeriJoy organizes caregiving companionship—when family, friends, or local caregivers are not around—through a tablet interface connected 24/7 to “a remote team of human caregivers and advanced computer intelligence systems.”31
These technologies assist in the governance of the way older people live: they expand and both qualify and limit care, produce new risks, intensify individual responsibility for managing one’s own end of life, and open up new kinds of surveillance of everyday embodied experience. This biomedicalization of daily living reveals that “the boundaries between coercion and consent begin to blur as new administrative technologies promote autonomy, informed choice, and non-directiveness within a general ethos of ‘quality of life.’”32 Quality of life and independent living are achieved through home surveillance and paternalistic biomedical penetrations of home space and the body that impose limitations on the civil liberties of the elderly at home—an attenuated form of independence and insecure senior citizenship. The Fourth Amendment right to privacy, in particular, is at risk: the privacy rule to protect health information—under the Health Insurance Portability and Accountability Act (HIPAA)—likely does not cover health information and biological metrics collected and transmitted through mobile technologies or third parties that monitor homes. The monitoring of activities of daily living (ADLs), such as how often you turn on the television or visit the toilet, does not necessarily meet the definition of health data and is therefore outside the purview of privacy protection. Because aging at home involves relinquishing some degree of autonomy and privacy rights, it may lead to a general condition of “house arrest” for seniors and data-mining operations.33
Moreover, home technologies and aging at home remain inaccessible to many people; government subsidies are restricted or nonexistent. On a basic economic level, home care invites you to live in your house longer, equipped with technologies that assist you, but you must also manage your own end of life with fewer public resources and potentially no retirement or personal savings or community around you. The adjustment to old age takes the form of an individual ethical domain and enterprise that exacerbates rather than remedies structural inequities and differences in old age based on class, race, gender, and so forth. Old people are governed within lifestyle profiles allied with neoliberal agendas that vilify dependency and treat “aging bodies and identities as risky, vulnerable, and in need of self-vigilance.”34 Just as approaches to gerontology and health promotion programs emphasize mobility, cognition, and social activities, successful aging in the home is inherently normative and restrictive, offering blueprints for healthy aging tethered to middle-class moral and family-oriented conventions.35 Home care, in this sense, may intensify moral regulation of aging—that is, aging becomes a kind of work ethic or even workfare that is the responsibility of every individual.36 Moreover, the notion of “independence” that provides the rationale for the expanding senior tech market secures against the leaky, unstable embodied reality of aging. Independent living and successful aging tend to be anti-aging, prophylactic discourses that shut down the opportunity to come to terms with the relentless coming-together and coming-apart of the messy existence of older persons, with their assistive devices, home monitoring, Medicare/Medicaid restrictions, and vulnerable shifting bodies.
Underwriting the ideological projects of longevity and independent living, third age discourse promotes the logic of “functional aging” and extends this across the whole of life, demarcating an ever-expanding zone of governance: of midlife, prime life, and extended adulthood. Functionality, as a concept, is tied to the idea that the body should operate according to normative criteria of and for embodiment: this is inextricable from the Cartesian notion that the body is subservient to the mind—that the self has a body that it controls. In a narrower sense, and in relation to our focus here, to be functional (to have a body that works properly) requires fitness, enablement, avoidance of impairment, and prevention of disease.
We see increased emphasis on functionality in the fact that one cannot officially die of old age in the United States—it is not a specific enough reason for dying to be included in the standard list of contributing and underlying causes of death used by state and federal agencies.37 Instead, aging—unmoored from the idea of a natural life course—is treated like a disease and subject to intervention.38 Functional age—the idea that age can and should be defined in terms of functional capacity—“drives the imperative to biologize the aging process apart from chronological aging by co-ordinating the body’s biomarkers.”39 These biomarkers of aging—specific to individuals and even differentiated by tissues, organs, or organ systems within the same body or organism—can be measured and predicted, thus allowing for customized intervention and alteration of rates of aging. “Exhaustive batteries of tests, aggregations of data, scales, indices and self-reports” based on these biomarkers implicate the individual as an active participant in striving toward functionality and the “collective ideal of enabled fitness.”40 Stephen Katz and Barbara L. Marshall characterize this now-dominant bioculture of aging: “the biosocial rationalities of functional age and independent living correspond, therefore, linking functional bodies to functional populations. Supporting this correspondence are the bio-identities by which people can know themselves as functional and participate in a gerontological culture of enablement.”41
Quantifiable standards of functionality circulate well beyond eldercare under the signs of what is normal, natural, and healthy. The goal of being functional connects with broader social mandates around active and mobile lifestyles, responsible self-care, adaptability, freedom of choice, and economic independence.42 The objective of functionality enables pharmacological and therapeutic interventions into aging at any age to preempt or modify dysfunctions, pathologies, or potential disease. This stretching of midlife to late life makes the risks of old age more present in midlife; simultaneously, “with midlife the universal ideal, older people meet the stringent criteria of successful aging only insofar as they are not ‘old.’”43 At increasingly younger ages, people are exhorted to monitor their lifestyles and modify their behaviors throughout life—avoiding disease and disability, maintaining high physical and cognitive functional capacity, and actively engaging in life—to ward off midlife decline.44 One example is the idea of “retirement readiness” or “retirement fitness,” along with the midlife popularity of activity trackers such as the Fitbit or Oura ring.45
Biomedicine also promises to secure against bodily decline through biological preemption and emancipation.46 This signals the genetic determination of life-span and the increased significance of gathering health intelligence through the biosurveillance of risk. Human longevity entails “cracking the code” of the body as a data machine, to prevent disease; this essentially molecularizes healthy aging—that is, it biologizes securing against aging.47 The company Human Longevity Inc. exemplifies the biosocial rationalities behind this reliance on informational technologies that connect individuals and groups to genetic dataspheres and their experts. Billed as “your health intelligence partner,” Human Longevity claims to be “revolutionizing human health by generating more data and deeper understanding into what can keep you living healthier longer.”48 Its products include HLIQ Whole Genome, “a comprehensive report ordered by your physician that compares every letter of your DNA with the world’s largest database of sequenced genomes and phenotype data, to reveal your best opportunities for proactive, preventative health planning.”49 Framing genetic research and testing as an investment in oneself—“Health is the new wealth. Invest in yours.”—the company enlists participants to biosecuritize the self against the body/biology (in terms of disease, decline, aging, death) and contribute to a heroic culture of perfectability and bio-investments in longevity.
The capacity of individuals to pursue such data-driven strategies to preempt disease and decline again depends heavily on a basic foundation that many people lack in the United States: “adequate income, access to affordable and nutritional food, a healthy and safe neighborhood in which to live, and affordable, good-quality health care.”50 Additionally, as Katz and Marshall explain, “health literacy is embedded in class, gender, racial and regional inequalities and hierarchical forms of cultural capital.”51 Understanding aging merely as market trend or genomic sequence obscures how the population of older people experiences aging as a diverse process along heterogeneous axes of difference with uneven access to health and wellness resources.52 The emphasis placed on individual management of aging in late liberalism fails to address the structural aspects of unevenly distributed life-spans and premature deaths—which continue apace regardless of biomedical advancements in longevity. An emphasis on “exceptionalism” in health and productive aging—“I made it; why can’t you?”—does nothing to eliminate larger patterns of oppression.53 If you are unsuccessful, it is your failure, not society’s.
Moreover, the pursuit of functionality, as it intersects with notions of longevity and independent living, bolsters “cultural denial of disability, dependency, and ultimately death.”54 Disability is particularly repudiated. Supplanting an earlier dread of aging with a more specific fear of aging with a disability, norms of positive aging treat visible “oldness” as disability and consider disability to be a reflection of failure. This galvanizes fears of bodily suffering and even of the elderly themselves, leading to inadequate policy responses because people whose bodies evoke suffering or are “out of control” are blamed; “older people with functional limitations, most of whom are women, [are denied] the dignity of their struggle to accept what they cannot change.”55 Equating good health with successful aging—and disability and poor health with failure—ignores the diverse ways that individuals experience aging physiologically, emotionally, and socially.56 The notion of productive aging is essentially anti-aging, in that one learns nothing about what it means to experience “becoming spent” through the passage of time.57 Instead of fostering a sense of accomplishment and commitment to the meaningfulness of aging as a kind of transformation connected to and preceding death, longevity strategies reduce aging to the most basic norms, devalue old age, and desocialize death.58 Brett Nielson warns, “At stake is nothing less than a rethinking of models of citizenship and economy that presuppose able-bodied subjectivity, a proviso that applies as much to celebratory notions of the Third Age that suppress the knowledge of eventual bodily breakdown, as to the normative concepts of well-being and human capability that derive from the body-related universalisms of Western thought.”59
Biofinancializing Old Age
The pursuit of active, independent living and other strategies that forestall decline are mechanisms that aim to secure a population that “ages well.” Third age discourse and the “longevity revolution” of delaying aging aim to keep people healthier to live better lives and preempt the burden of aging on society. Advocacy for the future health and economic value of older Americans, however, confronts the social implications and political–economic consequences of expected longer life-spans—and, specifically, the onslaught of baby boomers approaching middle and later ages and the looming problem of Social Security shortfalls and rising medical demands. The political rhetoric on aging at national and international levels warns against a “global aging crisis,” “age bomb,” and “baby boomer bust.” In this context, new metrics associated with global health economics have arisen to construct and assess the health of the population as a scientific and economic problem. Institutions and individuals have adopted such quantitative biofinancial techniques to secure against the threat of old age: the tools highlight areas of concern and stress points in the population’s health and conditions of aging where public campaigns and interventions can be made and where individuals can focus to change their lives. While third age pursuits of longevity, independent living, and maintaining functionality seek to preempt the burden of aging, health economic strategies secure against decline through the biofinancialization of old age—within the context of both a neoliberal environment of devolving age-care services and the transferring of responsibility for the maintenance of the elderly to communities, networks of social capital, and markets. The biofinancializing of old age, we argue, positions aging as a security problematic for biopolitics via framing and assessing the burden of aging in terms of economic loss and costs.60
A neoliberal global health regime has tied the management of human bodies closely to economic management, with cost-effectiveness the method for prioritizing health services.61 While the field of global health is expansive and international, the older/aging population of a nation is perceived as a threat, and thus governance aims to secure against the decline of the national body. The burden of old age is defined here not as genetic or eugenic but rather as the costs borne by national medical/health care systems. In an aging U.S. society, “a growing array of life-extending medical interventions, Medicare policy and an ethic of individual decision-making together contribute to the deepening societal tension between controlling health care costs and enabling health consumer use of life-sustaining technologies.”62 Measuring aggregated health allows for prioritizing specific applications of health care funds and assessing their success. Instead of mapping disease patterns and scrutinizing the problem of morbidity in relation to deaths, biopolitical governance focuses here on calculating disease burdens and examining “morbid living”—that is, the functional and impaired health states of the population and the health-spans (not life-spans) of individuals. Part of the late twentieth-century influx of rating scales, scoring systems, and various indices assessing quality of life and well-being, measurements such as “years of potential life lost” (YPLL) make nonfatal outcomes calculable. Similarly, “health-adjusted life-years” (HALY), “disability-adjusted life-years” (DALY), and “quality-adjusted life-years” (QALY) perform a new epistemology: departing from measuring life/death rates of a population, these metrics support health status valuations, quality of life scores, and calculations of morbid living based on severity, disability, impairment, and functional aging.63 The focus on decline connects lost life chances and suffering with the costs to society—whether direct costs to health care or indirect costs of lost productivity.64 Experts in this area account for loss of healthy life due to disease, death, and disability on a national competitiveness and global scale. The data are used to redesign and optimize health systems according to the logic of economic maximization—investing in health as an economic project and economizing life by imagining health as a form of human capital.65 This approach weds life expectancy to productivity—the impetus of the discourse of third age.
The health metric DALY, for example, measures disease burden at the population level in terms of the “reduction of the functioning capacity of individuals, defined as the ‘ability to perform ADLs such as learning, working, feeding and clothing oneself.’”66 From the 1990s on, DALY has been used as a way to assist governments in setting health priorities. In one of its prominent appearances, the Lancet in 2012 published DALY for 291 diseases and injuries in twenty-one regions on the global burden of disease from 1990 to 2010.67 The work accounted for population health by calculating the incidence of health and disease at a global aggregate level. Previously, mortality statistics and risk of death were used to calculate the number of deaths from disease; DALY, by contrast, factors in loss of healthy life due to disease, disability, and death by measuring mortality and morbidity together in the same unit of analysis. The overall “problem space” of DALY is the loss of the mode of life proper to competitiveness as a consequence of the impact of disease on the individual and collective. DALY’s underlying claim is that the impact of a disease or condition may not be fatal, but its disabling effects contribute to economic losses, diminished productivity, and strain on health systems.68 DALY essentially offers an approach to individual and societal worth that synthesizes biology and economy: it considers health in relation to economic contribution, attempts to quantify it, and then uses the figure to evaluate economic and thus social contribution.
DALY accomplishes this “economization of life by disaggregating lifetimes into component units of time and reassembling life as a revenue stream [as human capital] to be maximized through practices of self-investment in one’s own health.”69 Whereas vital statistics previously measured life as a coherent unity from birth to death, DALY measures loss of life as the loss of its constituent parcels of time.70 Put differently, DALY negatively measures the severity of disability caused by disease, decline, aging, and so on, multiplied by the duration anticipated until remission or death. One DALY is one year of healthy life lost to premature death or fractionally to disease and disability, following the equation DALYs = YLL (years of life lost) + YDL (years lived with a disability of specific duration and severity). The calculation gauges the loss of health from an imagined ideal state, in terms of the present value of the future impact of life lost to death and disease. Following the economic convention of prioritizing immediate over future gains by discounting the future at a steady rate, DALY is a decremental measure, meaning the value of years of life lost decreases as you get older. In other words, the equation discounts the value of years of life as one ages; it also equates aging with disability and disability with decline. In application, DALY serves as a forecasting technique that attempts to optimize rates on returns of investment in health; the metric facilitates the use of cost–benefit analysis in prioritizing potential health interventions in the units of dollars spent per DALY gained.
DALY and other like metrics support a market-led biopolitical regime by ascribing a value of life that, as Emma Whyte Laurie argues, leads to “the devaluation of certain populations,” specifically the elderly.71 Kevin Morgan contends that any method of valuing human life for planning purposes inherently discriminates against older people; any allocation of resources on the basis of age risks moving, in David C. Thomasma’s words, “the elderly into the house of the dead, precisely because they ‘cut off’ the elderly from the modes of care we offer to other persons in society.”72 DALY calculations are open to misuse as a means of channeling resources away from the elderly and chronically sick due to the economic rationality that undergirds the metrics. The underlying logic of efficient and cost-effective resource allocation places limits on the availability of health care in response to background conditions of scarcity and austerity. These limits are perceived to be apolitical and neutral—achieved through technical methodologies and instruments. Yet, as numerous critics have noted, the utilitarian technocratic approach is incapable of addressing distributional issues: efficiency supersedes equity and can be (or is) used to exclude parts of the population under the banner of “what’s best for society.”73
In this respect, DALY simultaneously exacerbates and obscures inequitable distributions of life and resources by setting a standard of life expectancy that decontextualizes calculations of the global burden of disease (measured in DALYs) from actual health conditions of people. An ideal life expectancy is assumed to be the same across the population, with no acknowledgment of highly variable sociocultural and historical conditions, removing any geography and material conditions that define or limit life: the limit to life is relocated to a speculative future where it serves as the point at which death is no longer premature. Furthermore, by recasting health as human capital—an investment commodity representing the total amount of time for market and nonmarket activities—the biofinancializing of old age sorts out high-mortality populations as failed investments and may justify a neoliberal biopolitics of disposability—the abandonment of parts of the population—based on projected losses.74 An individual may experience this as a kind of double jeopardy in an unjust distributive political economy of resources and care: after a disaster strikes a patient and leaves them with a poor quality of life, such metrics could disqualify them for life-saving treatment because of preexisting conditions and relegate them to a socially acceptable minimum of care via an expanding sector of hospices for the chronically sick in addition to the terminally ill.75
While DALY rationalizes the discounting of elderly lives via assigning different values to years of life lost at different stages of life (an elder is less valued than a middle-aged person, who is considered to belong to the most productive part of society), it is disability that is cast as the ultimate unproductive life, due to the weighting of disability severity within DALY calculations. Using S. Lochlann Jain’s term, DALY’s weighing of states of compromised health has a “mortality effect”: the discounting of the lives of disabled people who are relegated in some applications of DALY to a status worse than death.76 Disability is considered to undermine economic productivity potential—part of a broader imaginary of disability as a life without a future unless capacitated through biomedical and/or biocapitalist futures that “overcome” disability.77 The metric basically channels embodied vulnerabilities that stem from social relations of class, race, gender, sexuality, age, and so on—any social, political, and economic conditions that delimit reproductive futurity and life expectancy—into the category of disability, as an expansive, flexible area marked for disinvestment. The elderly and those who do not age well are at risk of being punished for conditions beyond their control via the market logics of a utilitarian health economics.
Governing in Decline
The governance of aging, as we have explored, works to secure “aging well” by maximizing third age—by promoting longevity, independent living, and functionality. At the same time, the biofinancialization of old age and the techniques and metrics that are used to assess the burden of what is seen as “age-related decline” are deployed to secure against the costs of aging populations. In what follows, we consider how age-related decline itself is governed, that is, how the administration or management of aging stretches into what might be termed “later life”—into the last moments of life itself. Here the dominant logics of biocultures of aging structure expectations of what should be done for and to the elderly. We examine two key areas of the governing of age-related decline: first, we consider what is often the relentless effort to secure the lives of ailing older individuals on the brink of fourth age within the biomedical arena. We ask, what are the limitations and costs (social, personal, conceptual) of such efforts? Second, we explore the broader political economy of eldercare in the United States to analyze how economic rationalities condition the treatment of older individuals both in hospital care and in the biomedical aftermath—specifically in the extrabiomedical environments of nursing homes and hospice care. We argue that, rather than securing the lives of those on the event horizon of life, these extrabiomedical sites can be considered “shadowlands,” where those in fourth age are subject to forms of “deadly care” and are often abandoned.
More Life at Any Cost?
The biomedical arena is a key site where the affirmation to secure aging subjects emerges, precisely because biomedicine “exists in a cultural milieu that stresses longevity by any means and at any cost.”78 Within this context, seriously ill older individuals are increasingly encouraged to push against the risk of death—to avoid death a little longer—in order to gain additional years, months, weeks, or simply days. This effort to secure more life is enabled through increased biomedical interventions in later life. Indeed, the biomedical model of health—which focuses on biological factors of health promotion, generally to the exclusion of psychological, environmental, and social influences—undergirds this life-making: it is viewed as “the right (and perhaps only) tool for managing the problems of aging.”79 Thus these “problems” are supposedly “solved” through the consumption or purchase of more and more high-cost medical services and technologies by those who are able to do so. Reflecting a lack of steadfast clinical assumptions about what can be done for older patients, individuals in their seventies, eighties, and even nineties are now undergoing, often as a matter of course, procedures such as cardiac bypass, angioplasty, stent, and pacemaker placement, renal dialysis, kidney transplant, and aggressive cancer treatments to extend their lives. What this highlights, as critical gerontologists and scholars of aging have noted, is that chronological age is receding as a factor in treatment.80 That is to say, for physicians in particular, the age of a patient is no longer a predictor of whether a particular procedure is viewed as warranted. Instead, “clinical responsibility means performing life-extending procedures regardless of age, as long as there is a possibility that potential benefits might outweigh the risks.”81
Interventions such as those noted above have become routinized, normalized, and expected, as Sharon Kaufman and Lakshmi Fjord have stated, “regardless of end-stage medical conditions . . . and irrespective of financial burden to families or social costs to the nation.” This, they argue, is a particularly U.S. phenomenon, “in which progress and individual aspiration are manifest in technological know-how and technical solutions.”82 Importantly, it is also the very routinization of treatment that rules the choices that both clinicians and patients make. On the clinical side, as any given (and approved) technology emerges, clinicians are guided to think of it as an “ethical necessity.”83 Treatment becomes an imperative precisely because of “technical ability” (that is, when a technique has been perfected and proven to be potentially efficacious) and because the patient meets the criteria for intervention. On the patient side, individuals and their families experience the imperative to treat “as hope materialized and actualized.”84 The routinization of treatment also produces a form of moral obligation for individuals and their families: faced with the choice of life-extending treatment, they must take on the responsibility of balancing too much or too little intervention. The conjuncture of ethical necessity/moral obligation and technological capacity both shapes “what should be done” in terms of treating older patients and functions as a form of governance—regulating both vital materiality and how disease or decline is encountered.
Cardiac care treatment offers a salient case in point. Life-prolonging cardiac treatments—which include angioplasty stents, coronary bypass graft surgery (CABG), and implantable cardiovascular defibrillators (ICDs)—are now becoming routine in the United States for those in their eighth, ninth, and even tenth decades. This expansion of cardiac treatment is in part due to the proliferation of risk discourse: the idea that risk is everywhere and should be monitored and then intervened upon.85 In terms of ICDs in particular, it is risk that is now treated.86 We see this in the criteria for ICD implantation and classifications for eligibility for Medicare reimbursement for this procedure: before 2003, ICDs would only be implanted and eligible for reimbursement under Medicare if a patient presented with a minimum of one incident of cardiac arrest or documented arrhythmia; in 2003, eligibility criteria to receive both the device and reimbursement changed, expanding to include those who had had one heart attack or who met certain measures of declining heart function.87 By 2006, however, ICD treatment and Medicare coverage were broadened to most individuals with weakened hearts, even if they had not had a cardiac event.88 This wider casting of the net of who can and should receive ICDs highlights that the device is now conceptualized as a safety net or prophylaxis. It is used simply because of the existence of risk (to prevent the possibility of future heart attack), not because of the existence of disease or symptoms. It operates, then, as a measure of biopolitical risk management for those demarcated as belonging to a high-risk group. At the same time, the risk produced as a by-product of treatment is seen to have decreasing relevance as ICDs become standard. And, precisely because they have become so common, they are difficult for patients to refuse, even if the benefits are negligible.
The risk discourse that dictates cardiac and other forms of biomedical care in the elderly “often provides the rationale for intensifying the frequency and aggressiveness of treatments,” producing what Janet K. Shim, Ann J. Russ, and Sharon R. Kaufman call “technological incrementalism.”89 They explain this as a process in which increasingly normalized noninvasive treatments become the grounds for justifying ever more subsequent and invasive interventions. What we see, then, is an “interventional continuum” or intervention spiral, where elderly patients receive more and more extreme supports or technological aides in order to secure/prolong life: an ICD, a series of stents, multiple invasive heart surgeries, an oxygen tank, a permanent catheter, and so forth. The paradoxes at work here are that the aged body is simultaneously viewed as diseased and a space for intervention, and age is viewed as irrelevant for medical intervention in one and the same moment that an age focus (to push back decline) permeates biomedicine.
Importantly, increased biomedical interventions in later life—the seemingly relentless effort to secure life in older individuals—often create a denial of death: everything is done to deny death and there is often a lack of acknowledgment of death as a possible outcome until all treatments have been tried.90 Two key effects can be noted here. First, the kinds of biomedical interventions we have named can prolong life into morbid life (this is, needless to say, another paradox). Morbid life can be defined as a long process of dying, where death or deathlike existence is brought into life. Put another way, this might be thought of as death by degrees, what critical gerontologist Harry Moody calls “prolonged morbidity” and what Sara Manning Peskin names “protracted dying.”91 We might also consider this form of death-in-life as prosthetic or attenuated life, where life’s continuance is only enabled through the disciplining of the individual body, where the body is hooked up to or intervened upon by various forms of biomedical technologies and techniques—sustained by machines and devices. Second, the incrementalism of these biomedical interventions can rule out the possibility of what is thought of as a “good death.” Recall that the affirmation to secure life/health operates through the promotion of responsibilized and entrepreneurial activity, which is equated with autonomy/independence: this is considered the “good life” in biocultures of aging, and it is this good life that supposedly leads to or enables the “good death”—which is also valorized as autonomous (crafted through a series of individual choices) and without burdensome pain, symptoms, and technological dependence. Additionally, the good death relies on the biomedical concept of the compression of morbidity: to “compress the time horizon between the onset of chronic illness or disability and the time in which a person dies.”92 Yet such a situation is at best constrained or at worst foreclosed. Pain, symptoms, and technology are now part and parcel of the march toward death due to the normalization of biomedical interventions in eldercare. Rather than compressing morbidity, these interventions, as we have noted, often prolong morbid conditions in life. Given that 63 percent of Americans die in hospitals, autonomy is severely limited in death: the trajectories of dying and death itself are intimately administered through hospital regulations and health structures.93
The Biomedical Aftermath: Shadowlands of Dependency
The curative imperative of biomedicine and the affirmation to secure aging subjects are further complicated by the political economy of eldercare in the United States. Most specifically, neoliberal rationalities—the market logics that have increasingly been applied to the delivery of treatment—are restructuring the care of older individuals. Such restructuring is evident, for instance, in what is known as the Diagnosis-related Group (DRG) Prospective Payment System. Introduced in 1983 by Medicare, the DRG system is a method of prospective (rather than retroactive) reimbursement by Medicare made to a hospital based on a patient’s initial diagnosis. A patient must fit into one diagnosis-related group (originally of 468 categories), and each individual DRG has a predetermined fixed price attached to it, based on the average cost per case for that category.94 This accounting technology is “thought to contain within it specific incentives to motivate hospitals to control costs of treatment to Medicare beneficiaries.”95 The focus is economic efficiency—a boon to the administration of recording, analyzing, and allocating costs of individual patient services (e.g., medications, procedures, tests, room and board) in line with the prices set for a particular DRG.
However, given that Medicare provides health insurance mainly for Americans over sixty-five years old, the consequences of this desired economic efficiency predominantly affect the elderly. Hospitals have been known to concentrate on what are considered the most lucrative DRGs (also referred to as “product lines”) because they have been compelled by the system to reassess procedures where cost exceeds revenue. This has also led to what is known as DRG “dumping”—where nonprofitable DRGs and patients are rejected from other hospitals and dumped in city-run or state hospitals—resulting in the redistribution and rationing of care. Moreover, to control costs within the pre-set price, hospital managers often push doctors to treat patients for less (by ordering fewer tests and discharging early), meaning that patients are generally now discharged “quicker and sicker.”96 Ultimately, the DRG system has changed the patient experience of care, as Alistair M. Preston has noted: the disease category rather than the patient is the focus, and the imperatives of the system “heighten the economic dimensions of important treatment and leave less room for the human dimension of care.”97
The huge expansion of the for-profit sector in the U.S. biomedical sphere—where the provision of health services has increasingly come to be viewed as a business—is another factor that has led to the restructuring of eldercare. This is especially evident in the rise of for-profit investor-owned hospitals. For example, between 1975 and 1983, investor-owners added five hundred new hospitals and sixty-two thousand beds to the health market, more than doubling holdings during this period.98 The sphere has also seen a massive expansion of investor-owned companies (“systems” within which one company will have multiple holdings), leading to a shrinking of health care market diversity. The objective here is primarily profit maximization for shareholders rather than care delivery, a scenario that has specific effects on services aimed at the elderly. In a hospital context where the average number of days of stay in acute care has plummeted to fewer than five—as a means of controlling costs and maximizing profits—elderly patients are particularly subject to precarity, due to their more frail health and recovery capacities after discharge.99
Additional changes to eldercare delivery have occurred due to the rise in investor-owned ambulatory care facilities, such as outpatient surgery, urgent care centers, dialysis clinics, cardiac rehabilitation centers, physical rehabilitation centers, and diagnostic imaging/radiology centers that have proliferated with the marketization of U.S. health care. These ambulatory services are often “multiproducts” owned by hospitals (that then enable or create a stream in and out of hospital), where for-profit status is dominant.100 The consequences for the elderly of this rise in ambulatory services are numerous: they now often see multiple doctors who do not necessarily cross-communicate, meaning that care can be compromised; elderly ambulatory care patients may have inadequate knowledge about their current therapies—due to the fracturing of health care, advancing age, and often cognitive decline—which can negatively affect health; and the increase in health care costs associated with ambulatory care directly impacts the elderly, who generally have lower incomes and greater health needs.101 These examples highlight that hospitals and satellite health services are increasingly governed by profit imperatives, efficiency, and cost accountancy (especially linked to cost reimbursement from government). Such rationales create a situation in which any form of dependency is disavowed in the biomedical arena, and long-term care for the elderly is foreclosed.102
Sustained care for dependent older individuals instead takes place largely outside the immediate biomedical arena: it is the extrabiomedical sphere that ostensibly secures lives in decline. What we see, however, is that older frail individuals—in fourth age—are often channeled into a range of shadowlands—landscapes of abandonment—where they are made invisible and subject to discursive erasure at the event horizon of life. This erasure is in part produced by the biomedical model, which pushes mortality to the perimeters of social consciousness. Nursing homes and hospices are two such shadowlands or biocultural spheres of erasure that might be said to produce a form of “social death.”103 They both physically sequester the ill and dying, out of sight from the general populace (often in banal/ordinary landscapes in plain sight); they are socially alienating to residents, who are excluded from the lives they have led; and they both often negate the subjectivity of individuals in their care, in that the needs and agency of the elderly are often subsumed in the very process—and proceduralization—of delivering “eldercare.”
Nursing homes, for example, broadly exist to provide care to dependent elderly individuals who can no longer look after themselves due to physical and/or cognitive impairment—those subjects Nancy Ettlinger names the “infirm elderly.”104 These institutions deliver round-the-clock medical attention and assist residents in navigating their ADLs, such as bathing, dressing, toileting, and eating. Nursing homes can provide short-term care, often following hospitalization, and/or long-term care for those who are no longer able to return to or remain in their homes. This care is publicly funded for individuals who do not privately cover their costs, with Medicare providing higher-paying reimbursement for short-term stays and Medicaid funding long-term care. In that nursing homes administer the social problem of infirmity in old age, they can be viewed as biopolitical institutions that foster and maintain the “end of life”—by securing aging subjects. Yet, contrary to this welfare-oriented “pastoral care” understanding, the reality of many nursing homes is quite different. This contrary viewpoint can be seen in that nursing homes often operate as speculative financial instruments or commodities in the corporatized health care market. According to Ettlinger, they were the first major institution to capitalize on an aging society, and they remain a forerunner in the ever-escalating privatization of U.S. health care.105 In 2014, the Centers for Disease Control and Prevention (CDC) reported that 69.8 percent of nursing homes were for-profit, making them key “vehicles of investment.”106 Moreover, large firms outside of health care own many of these for-profit nursing homes, which became attractive precisely because they are so profitable.
Factors that led to the corporatization of nursing homes and their profitability are numerous. In the 1950s, the federal government established Federal Housing Authority mortgages that paid 90 percent of project costs for the construction of new nursing homes; by the 1960s, this resulted in a building boom in nursing home construction, exceeding the actual need among the elderly. This building investment operated essentially as a form of speculative real estate, with nursing home chains replacing smaller establishments and the sale of stock in these nursing home chains becoming a source of capital for the parent company. Of note is that these chains use complicated corporate structures that shield owners from lawsuits that might arise due to neglect or violations of legally imposed requirements for nursing home operation and care delivery.107 A second core factor in the growing corporatization was the 1965 introduction of Medicare and Medicaid funding for short-term and long-term nursing home care, as previously noted. Per this funding, the federal government would cover the mortgage interest for nursing home facilities, enabling firms to use the initial mortgage on a property to finance the purchase of others in an operation known as pyramiding. This now-common occurrence—of multiple properties being owned by chain organizations—further obscures responsibility for substandard care and abuse.108 Adding to the Medicare and Medicaid funding and assistance programs, the 1987 introduction of the Prospective Payment System (specifically DRG) incentivized fast hospital discharge to nursing homes for short-term stays, which in turn increased demand and contributed to the boom in construction. Important to note also is that as of 2002, 70 percent of networked companies or chains that owned nursing homes channeled revenues to other firms, essentially laundering money through the nursing home to other parts of the organization. This has enabled owners to claim that the institution operated at a loss and thus needed heightened government subsidies.109 Through these brief examples, it becomes evident that the corporatization of nursing homes—and the economic incentives at work—often eclipses what many see as their core function: to provide pastoral care and secure the lives of the elderly infirm.
More than simply being compromised through corporatization, however, nursing homes often work against the very “make live” principle of contemporary biopolitics by providing what we call deadly care. Care in nursing homes can be deadly in a conceptual sense, in that it can engender social death—relegating the ill elderly outside the boundaries of community. In a more tangible sense, however, care can also be deadly when it curtails life—when it threatens life’s continuance or when, in extreme cases, it results in premature death itself.
Revenue raising imperatives and cost-cutting rationalities of for-profit nursing homes (which, recall, are the majority) can be particularly detrimental to care—and, in many reported cases, deadly. Driven by the need to minimize costs of care and maximize profits, these institutions typically prefer short-term-stay residents because Medicare provides 84 percent more funding for these residents over Medicaid residents, who are longer-term, poor elderly individuals, often from underserved communities of color. Thus, many nursing homes move away from—and effectively abandon—longer-term end-of-life care for the elderly with extensive medical needs.110 In some instances, nursing homes have also been known to exaggerate the therapy needs of short-term patients to acquire additional Medicare payments. The California-based chain Ensign Group had to pay $48 million in 2013 to settle such charges.111 To attract these higher-funded patients, there is increasing investment in luxury facilities—such as the short-term-care wing of the Medford Multicare Center for Living on Long Island (known as the Lux at Medford); these facilities frequently include putting greens, “decadent hot baths,” indoor parking, and other high-end rehabilitation amenities.112 At the same time, however, minimizing the operational costs of facility operations is a key focus, resulting in cost cutting on meals and staff. This, in turn, leads to inflating the number of lower-paid nurse practitioners and aides, decreasing the number of on-site registered nurses, and often having no doctors on staff. What occurs, then, is a “chandelier effect,” where the glitz of marketing promises does not match the actual quality of care—which is severely scaled back.
Moreover, the delivery of care actually produces harm under these conditions of extreme revenue raising and cost cutting. For example, a Department of Health and Human Services 2014 report found that 22 percent of Medicare patients who were residents of a nursing home for fewer than thirty-five days experienced harm from medical care while in such facilities. A further 11 percent suffered temporary injury.113 Phillip C. Aka, Lucinda M. Deason, and Augustine Hammond speculate that such harm occurs in part because “nursing homes reaped lucrative profits as observable declines occurred in the care that they rendered to residents.”114 Furthermore, as more companies build nursing homes solely for short-term patients, many have been found to lack the capacity to deal with the specific and often acute medical needs of patients released from hospitals.115
Another way that care can be deadly in nursing homes results in part from the proceduralism involved in care delivery that addresses the biological body rather than a person with complex needs. Within these facilities, residents become a series of biological events that need to be monitored and accounted for under the medicalized gaze. Nursing home care primarily focuses on physical limitations and addressing incapacities rather than attending to the needs of the whole person, due in part to the medicalization of care but also to the documentation required of nursing homes by the government for them to continue to receive funding. Ettlinger describes the latter as “a maze of regulations that nurses and nurses’ aides must navigate, resulting in a regime of practices of continually filling out forms.”116 Such documentation—for example, defecation books that are used to monitor and record the bowel movements of every patient—results in an endless bureaucracy of auditing, which in turn leads to decreased care. Care, which we might take to include conversation, attention—the minutiae of slow, careful assistance—is a liability to “efficiency” in this context, because it does not count toward government reimbursement. Thus, “in this light, abuse derives from actually following the rules.”117
Several checks on the decline of care in nursing homes have been put in place to avoid harm being done to residents. The Nursing Home Reform Act of 1987 (at its inception) vested the Secretary of Health and Human Services with broad powers to address and enforce various standards of care, health, safety, and welfare/rights related to nursing homes and their residents in three main areas: care quality, inspection of facilities, and enforcement of newly introduced sanctions and fines for repeated violations. The Obama administration moved toward even tighter regulation of the health care system, which directly impacted nursing home care, though many of these measures are being wound back under the Trump administration.118 Furthermore, hospitals now pay penalties if too many patients are readmitted, meaning that many are reticent to send discharged patients to nursing homes with poor records. Inadequate enforcement of these checks, however, is widely noted. A 2008 federal report, for instance, found that deficiencies (violations of a specific requirement for nursing home care) were missed at a rate of greater than 40 percent in all but five states, highlighting the ubiquity of deadly care.119 The U.S. Government Accountability Report of 2015 found that deficiencies per nursing home surveyed had declined. At the same time, however, the report made clear that the average number of consumer complaints had actually risen, suggesting a discrepancy between clinical quality measures and patient and family experience—of ongoing deadly care.120
Hospice care is also ostensibly concerned with securing life: the goal is not primarily to make individuals live more but to achieve quality of life in the face of approaching death. This form of care is focused on optimizing remaining life—making the most of the time left, making this time as relatively pain-free as possible, and shepherding individuals toward death. In the United States, the hospice movement emerged in the mid-1970s, and by 1982, Congress had initiated a hospice benefit under the Tax Equity and Fiscal Responsibility Act, enabling hospice care to be included in the Medicare program. Core services of hospice include nursing care, personal assistance with ADLs, various forms of rehabilitation therapy, dietary counseling, psychosocial and spiritual counseling for both patient and family, volunteer services, respite care, provision of medical drugs and devices to alleviate pain and suffering from symptoms, and family bereavement services after the patient’s death. Multidisciplinary care teams (nurses, social workers, pastoral counselors, and nursing assistants, among others) deliver this kind of care, operating under the management of either the patient’s primary care physician or one affiliated with a hospice program. According to a National Hospice and Palliative Care Organization 2016 report on hospice patients from 2015, 44.4 percent died at home, 32.3 percent in a nursing facility, 15 percent in a hospice inpatient facility, and 7.6 percent in acute care within a hospital environment.121 Importantly, hospice care repudiates the curative treatment model dominant in biomedicine to focus instead on palliative care. The reported benefits of this form of care are that it provides a more favorable dying experience compared with hospitalization, according to many family members;122 delivers more personalized care plans than those available within a hospital environment;123 and enables patients to live longer, with an average twenty-nine days reported over those who are hospitalized.124
Clearly hospice care appears as a positive and desirable form of care, one that would particularly aid the elderly infirm in their transition toward death. Yet, older individuals receiving such care can also be viewed as occupying the shadowlands, on the event horizon of life. In one sense, this can be seen in the scenario outlined by Julia Lawton, who notes that hospice care—particularly in a facility—is “progressively able only to cater for those patients who cannot be looked after within the community, because the community cannot accommodate them either practically or symbolically.” She further argues that “it is not dying as such but, rather, certain kinds of deaths which are to be found within contemporary hospices.”125 The shadowlands in this context represent a sequestering of certain kinds of dying patients from the general populace, where the dying body is “dirty,” ruptured, decaying—where the “unsightly” aspects of dying become visible.
The laudable goals of hospice care are further complicated by conditional and limited access. Medicare-enrolled individuals, for instance, are not able to begin hospice care until all curative treatments have been abandoned. Thus they must choose between what are positioned as polar pursuits—the elongation of life through treatment and those benefits that hospice provides. Limited access is seen in that only 1 percent of hospice services are free for those without insurance, and while 85.5 percent of patients access hospice care through Medicare, 76 percent of those patients are white, fewer than half the hospitals in rural areas have hospice programs, and less than 5 percent of those categorized as “urban poor” receive such care in their last six months of life. Furthermore, 11 million undocumented immigrants are legally barred from enrolling in any federally funded insurance program, meaning that they cannot access the end-of-life care offered by hospice services.126
Even if individuals can access hospice care, it is increasingly governed by financial logics that can be deadly for patients. For instance, between 2001 and 2008, the for-profit hospice industry grew 128 percent, while the nonprofit sector grew only 1 percent. As of 2008, 52 percent of hospice organizations were for profit, 35 percent were nonprofit, and 13 percent were government owned.127 This for-profit sector only continued to expand, with the CDC reporting that as of 2014, 60.2 percent of hospice delivery programs or organizations were for profit.128 Again, such for-profit companies are beholden to their investors, and the implicit profit-making imperatives at work often threaten to compete with patient and family care. Rather than securing the remaining life of patients, what is increasingly being secured is the financial gain of the for-profit industry. This profit pursuit can be seen along two primary avenues: first, hospice providers delimit the kinds of care available, and, particularly in a for-profit operation, they can withhold care as they try to stay within the set funding amounts that they receive through Medicare. For example, expensive diagnostic tests that could find sources of pain (and enable the alleviation of patient discomfort) are often denied by hospice corporations to improve their profit margins. The Medicare funding structure can also mean that hospice providers come to exaggerate the forms of care given to bill Medicare for higher reimbursements that are then channeled back into the company rather than toward patients. Second, patients themselves can be viewed as vehicles of extraction, as evident in various instances of hospice companies recruiting individuals for hospice care (while in hospital) to inflate the company’s Medicare billings. In late 2017, for example, Chemed Corp. and Vitas Hospice Services agreed to pay $75 million to resolve charges relating to their practice of both billing for ineligible patients and reporting to Medicare for inflated levels of care.129 Chemed—the largest provider of hospice services in the United States (operating forty-six facilities across fifteen states and the District of Columbia)—reportedly sent employees to nursing homes under the instruction to recruit patients and then rewarded those employees with bonuses for the additional number of patients they brought in for hospice care. Another hospice provider “was indicted for allegedly paying nursing home operators $10 per day to assist in patient recruitment efforts and paying physicians $89 a month to certify patients as hospice eligible without examining the patient or reviewing medical records.”130 In such cases, profiteering eclipses care, and the original philosophy and ethics behind hospice are abandoned—along with the patients.
Ultimately, these arenas where the dependent elderly are meant to receive assistance in securing life, or what life remains, are overshadowed by neoliberal biopolitical logics that render a social problem (infirmity in old age) as an economic opportunity. Both nursing homes and hospice can be seen to present possibilities for corporate welfare over social welfare, wherein the elderly infirm actually become vehicles for financial extraction. These arenas also overshadow care—their ostensible purpose. The proceduralism and cost accounting that are central to neoliberalism and the daily operations of these spaces actually work against the affirmation to secure by engendering deadly forms of care.
Counterconducts of Aging
The field of “critical gerontology” has raised important criticisms of the ways normative ideas about “successful aging” and anti-aging exacerbate social injustices and may even undermine aspects of our humanity.131 This chapter has sought to contribute to such discussions of justice and aging by foregrounding how processes that attempt to elongate and secure life can produce various forms of insecure senior citizenship and intensify inequalities in old age—even leading to harmful practices in eldercare and death. Although we have not provided an exhaustive account of U.S. biocultures of aging, we have examined several key aspects of the governmentality of aging, from the aging body and self to the aging population, from third age promotional rhetoric to the shadowlands of fourth age abandonment. Third age discourse and health metrics repudiate impairment and dependency and marginalize disabled individuals as nonproductive and thus “dysfunctional.” Affirming functional aging and independent seniors may justify a biopolitics of disposability of aging subjects who do not, or who are unable to, access technical aids or biomedical life extensions that maintain self-sufficiency and productivity—and who cannot align themselves with an escalating utilitarian health economics. The governance of dying bodies and bodies in decline in nursing homes and hospices, in particular, exposes variable gaps between “human” and “citizen”: individual bodies undergoing care in deep age, hovering between life and death, remain invested with rights but simultaneously risk exploitation and neglect. Moreover, citizen status stratifies the senior population and is itself insecure and stratified. Many elder bodies—poor seniors, elders of color, elderly women, immigrant seniors, LGBTQ elders, and so forth—fall into what Matthew Sparke calls “biological subcitizenship” in relation to national and global health regimes, wherein power relations and different mechanisms of exclusion, conditioning, and extraction shape aging. Aging is thus biological and a process of embodying differential degrees of health rights disenfranchisement and political–economic subordination.132
Our analysis focused on the deathly effects of affirming life in the face of aging and the deathly conditions that some people experience within the U.S. security apparatus against aging. However, we want to make clear that the compression of morbidity and alleviation of the pain of decline and dying are not “bad”: mitigating aging is linked to the biomedical ethical imperative to reduce suffering.133 Nor do we draw a line on the extent to which life-extending medical procedures should be used in late life or whether preempting aging, disease, and death via strategies of detection and successful aging results in more harm than good. Instead, our goal has been to locate openings for critical reflection on the governance of aging, old age, and decline. A primary concern is the encroaching forms of “morbid life” and subjection to deadly forms of care and predatory financial exploitation that old people—among the most vulnerable segments of the population—may now experience in the very institutions where processes of aging and dying are addressed and largely sequestered, that is, hospitals, nursing homes, and hospices. Policies that define aging as a security problem and actively influence these institutions often draw on economic accounting metrics and quantitative techniques of population management that position the elderly as with no future and whose years of life are valued less (for compromising economic productivity potential), unless capacitated through biomedical or technical interventions that “overcome” decline and disability. The dominant emphasis of third age discourse on “aging well”—to help people live more through activity regimes and other individualized disciplinary pursuits of volunteering, lifelong learning, and so on—essentially positions the degenerative capacity and dependency of old age as unacceptable. If to age well is to not have trouble, suffering, or cares—to not be vulnerable or subject to bodily precarity—then, as this chapter has argued, efforts to age well are value-laden and carry potentially negative effects, perhaps best exemplified by the alarming prevalence of militant rhetoric exhorting individuals to “combat aging.”134 In late liberal conditions, the maintenance of functional aging and healthy living has become part of the life work of each active citizen, with other modes of aging disregarded and even pathologized.135
What are our obligations across generations?136 In response to these security problematics of aging, how might an “emancipatory gerontology” work against the grain, counteracting the prizing of individualism and self-responsibilization of risk in favor of dependency, interrelatedness, and recognition of shared vulnerability? What practices, ethics, and social relations of aging demonstrate care and love for the oldest generations outside frameworks of economic metrics, medical treatments, consumerism, and offloading the elderly to the corporate shadows? What models of empathy and connectivity would revalue aging as integral to society and the lifeworld of the population, particularly where age functions as a mutable political and social threshold “between surplus and waste, obsolescence and renewal?”137 How might recognizing—rather than repudiating—differential but mutually shared vulnerability across the life-span reposition the elderly as positive contributors and mentors who can reveal something invaluable about life, its contingencies, and adaptation—including how to live in a dying body and how to secure a “good death” as a social rather than merely individual project?
A promising pedagogical innovation that may inspire an ethics of empathy toward the everyday experience of living with an aging body is AgeLab’s suit AGNES—the “Age Gain Now Empathy System.” Donning the suit equips the wearer with the prosthetic limitations of a seventy-year-old body.138 A short video demonstration on the AgeLab website explains, “This suit was designed to provide insight into the physical effects of aging. . . . Put on this suit and you feel increased fatigue, reduced flexibility in joints and muscles, spinal compression, and difficulty with vision and balance.”139 The idea is that the suit will allow designers, planners, product developers, architects, packaging engineers, and so on, to experience the challenges associated with aging for themselves; it is a method for investigating how a product, service, and/or environment is navigated and used by an older adult. AGNES gestures toward a design culture and, more broadly, popular culture that teaches empathy through creative prosthesis applications, experimenting with disability aesthetics to reposition interdependency and rethink agency and autonomy within social relations. AGNES represents one effort to design things through assisting and exploring—rather than denying or “solving”—a future that is accessible and engaging to the elderly and bodies with special mobility and motor function requirements.
Activism strategies around aging in the policy arena build on the U.S. civil rights movement by establishing multigenerational support for “elder councils” and other institutions that would hold old age in esteem and by advocating economic and health justice for people of all ages. The Gray Panthers, for example, have established a series of intergenerational advocacy networks across the United States that confront ageism and social justice issues, including challenging ageist laws, such as a mandatory retirement age; Medicare and Social Security preservation; multigenerational cohousing; the fair treatment of people in nursing homes; and racism in the aging policy-making arena.140 Since its establishment in 1970 and early admiration for the militancy of the Black Panthers, the Gray Panthers continue to be at the forefront of provocative demands that reject the docile acceptance of how social relations and institutions are organized to abandon, exploit, or generally repudiate the elderly and the laborers who care for the vulnerable elderly.141 The Diverse Elders Coalition, formed in 2010, advocates for policies and programs that improve aging for the diverse communities that compose the U.S. population, targeting economic insecurity among older adults of color and LGBTQ elders in particular.142 The coalition has directed campaigns to increase support for family caregivers who provide unpaid care labor so that family members, friends, and neighbors can age with health and dignity: for example, a dependent care credit that individuals who spend part of their working years caring for elderly family members can apply toward their Social Security earnings.143 The organization also seeks to close competency gaps that inhibit paid caregivers from providing the best care to diverse elders and to reform the U.S. immigration system by supplying more employment visas to domestic care workers as a high-needs sector and by creating more inclusive pathways to citizenship for this critical labor sector.144 These policy-directed efforts challenge U.S. biocultures of aging by focusing on the structural conditions of caregiving and by rejecting a limited clinical biomedical model of health and aging for an explicitly political framework of social justice.
Experiments with elderly commons, cohousing networks, and timebanking eschew corporate nursing homes and isolated smart homes for alternative social and intergenerational arrangements of space and time. Resident-created retirement solutions take various forms, from shared homes to communes, multigenerational housing to neighborhoods of people who watch out for each other and take on shared responsibility for meals, errands, and care. The national Village to Village movement—“a peer-to-peer grassroots network run by volunteers and paid staff to coordinate services such as transportation, home repairs, shopping trips, and social opportunities among seniors who live independently in their own homes”—reportedly reached more than 150 villages operating across the United States, with more than a hundred in development as of 2015.145 “Intentional communities”—an umbrella term for living situations organized around a common vision or value structure—also known as “cohousing,” conceptually migrated to the United States in the 1980s after originating in Denmark decades earlier.146 While earlier models have been artist collectives and religious or self-help communes, cohousing is a growing practice of increasing interest to young and old alike.147 Cohousing, by design, basically entails aging in community—a social agreement of mutual aid and care, whereby people willingly agree to live in a way that depends on others and supports others. The popularity of cohousing reveals that the trend of people seeking to age in place, to avoid institutionalization and remain in a home environment for as long as possible, does not necessarily mean an unquestioned acceptance of the risks and costs of this kind of independence. For many rising seniors, robo-equipped homes and the mental health deterioration caused by isolated and segregated “elderly islands” are not acceptable trade-offs for independence.148 Moreover, the lofty expenses of safety modifications that make individual homes accessible and of nursing care to each person’s home make cohousing and cost sharing desirable. Thus “home share can provide companionship, save costs, and enhance security—as a cost-effective alternative to isolated home care.”149
The Cohousing Association of the United States—which reported more than 150 cohousing member communities in 2015, stretching from Fairbanks, Alaska, to Atlanta, Georgia—inaugurated an Aging in Cohousing initiative in 2017 to support the creation of age-friendly cohousing communities and physical and social environments across the United States, where people can “flourish as they get older.”150 A roommate-linking service that references a mid-1980s-era TV sitcom about senior women sharing housing—the Golden Girls Roommate Network—remains an active resource for adults, especially women, to locate housemates and arrange cohabitation.151 Among the poorest segment of the population—often without retirement funds and unable to cover at-home care because they spent their lives caring for families—many women are creating their own retirement communities and practicing exclusively female, self-governing cohousing.152 For example, the Baba Yaga House—first developed in a Parisian suburb in 2012—incorporated more than twenty women ages sixty-six to eighty-nine, with one-third of them living on the poverty line—into an apartment building where each performed chores and pooled resources for medical staff.153 Named after a supernatural being in Slavic folklore who offers advice to younger women, the Baba Yaga House has traveled to North America, specifically Toronto, among women who want to live independently and cooperatively into old age within a community.154 With core principles of mutual care, shared governance, feminism and social justice, interdependence, community engagement, and environmental responsibility, the women’s cohousing project—in its original and subsequent iterations—exercises an intergenerational commitment through hosting open university courses and other events.155
Intergenerational housing and cooperatives can foster empathy for the declining body and secure social responsibility for the oldest population. There are communes, such as the Fellowship Community near Manhattan, that serve as alternatives to assisted living homes and hospices, where palliative care is undertaken by the community.156 Many U.S. families increasingly live with multiple generations under one roof, often to provide family-based senior care and cut down on costs; while most of these families live in ordinary houses, the home-building industry is responding quickly to the shifting demand by creating homes and metro-oriented developments geared toward multigenerational living.157 Beyond family or fellowship cohousing, intergenerational shared services and spaces can promote the dignity of seniors and mobilize co-mentoring and social interdependence. Timebanking, for example, values the time of senior participants as much as anyone else, encouraging reciprocity through helping and trading aid through a social network that treats everyone as an asset.158 Timebanks are a community of people who have agreed to trade each other their services, usually based on time as the currency (i.e., one hour of a computer specialist equals one hour of a domestic worker).159 One manifestation of timebanking is combining elderly care centers with preschools. For instance, the Intergenerational Learning Centre in West Seattle administers a preschool within a senior center that is home to more than four hundred elderly residents; the very young and old share lunches and a curriculum in music, dancing, art, and storytelling.160 Another possibility would be inviting young people to assist in nursing homes and elderly communities as a means to bank time—and thus earn credits—toward their own retirement, in the process broadening their perspectives on life, death, and the different ways that people navigate old age and its associated physical changes.161 In general, projects that locate university students and/or young families in nursing homes and cross-generational co-ops can both reduce living costs and improve care through timebanking.162 Generations United, an organization that supports intergenerational projects, lists numerous other cohabitation options: community centers with programs for multiple generations, adult day care and child care programs housed in the same facility, programs for disadvantaged youth run through a nursing home. Central to its mission is overcoming barriers that stem from the way U.S. funding streams and zoning or other regulatory requirements assume that segregating generations is socially desirable and correct protocol.163
Finally, adoption offers a way to revalue the elderly. Many faith-based groups run “adopt-a-grandparent” and “adopt-a-senior” programs, and some high schools and universities offer school credit to youth who visit nursing homes and assisted living facilities and pair up with senior residents to spend time with them.164 The more progressive programs encourage co-mentoring and co-learning experiences that are mutually beneficial to both partners, emphasizing the importance of social bonds and sorting out what matters in life and in facing death.165 Michel Foucault advocated for an even more radical right of adult adoption. Speaking in the context of rights claims about sexuality, Foucault argued that rights are not simply statements of universal truths but rather are performative practices that can “contest conventional ways of thinking about who we are, whom we should love, and how we should use our bodies . . . [and question] the dominant norms of relationships and practices of care.”166 As Ben Golder explains, Foucault bitingly criticizes the tenets of liberal individualism upon which rights politics are said to rest, as well as the unimaginative claim that rights politics are merely about limiting the power of the state to control the lives of individuals; instead, rights claims can challenge the ways that we live as much as domesticate them.167 Thus, claiming the right to adult adoption—and using the language of rights—might perform critical “counterconduct” that challenges conceptions of marriage and families and other structures of life that are often taken for granted as inevitable.168 The future of aging and the elderly involves nothing less than imagining and putting into practice alternative relations of care and obligation among people—beyond marriage and family and what may even count as normal and natural relationships.169 Karen Zivi elaborates on the challenge and potential reward: “the right to adult adoption would question these accepted relationships while expanding the possibilities for living together and caring for others. It would bring into existence a new way of understanding intimate relations of care and dependency, allowing us to ‘escape as much as possible from the type of relations that society proposes for us and try to create . . . new relational possibilities.’”170 Together, these alternative biocultures of aging reimagine what it means to secure life in old age, suggesting an expansive range of possibilities that attend to, play with, and revere vulnerability and relationality.