Family Responsibility for Caregiving Due to the Absence of Public Policy

Levitsky describes the set of social and demographic changes that have motivated the growing need for long-term care. Unlike other researchers, though, Levitsky does not consider these changes the root cause of the long-term care crisis. The effects of these changes could be mitigated, she argues, by effective law and public policy designed to address the specific needs of the elderly and the chronically ill. Yet, since caregivers perceive their work as part of their responsibility to family, they have not mobilized to demand public assistance. Absent a movement, lawmakers are disinclined to create programs to relieve the burden of caregiving.

By pointing to the disparity in needs versus resources and questioning the absence of a movement, Levitsky reveals a moment where law's absence helps to create institutional uncertainty. Without the government dictating how and where long-term care will be provided, other institutions take on those tasks in diffuse ways. This means that law becomes a less powerful force in shaping long-term care than other institutions, raising questions about how those institutions stake claims on long-term care.

In the absence of public policy, families have been the de facto arenas for eldercare, but Levitsky argues that this model has relied on an outdated understanding of family structure and has created a welfare state dependent on women's unpaid labor. Contemporary families often lack the resources to care for the elderly because women are in the workforce, people are living longer, families are small and geographically dispersed, divorce and remarriage rates complicate responsibility for caregiving, and care is more expensive with little to no relief from the state.

Lack of state funding also poses barriers to the medicalization of aging. Antigovernment, antiregulation policies under President Reagan helped to create a lack of support for medical care even as the need for care was increasing. Neither Medicare nor private insurance typically covers long-term care, and funding mechanisms have shifted healthcare providers' orientations toward care provision. Under older fee-for-service payment models for government healthcare programs, healthcare providers were motivated to perform services to secure reimbursement. Under newer prospective models that tie funding to diagnoses, providers are incentivized to provide less care to increase profit. Due in part to these shifts in healthcare financing, medicine is ill equipped and unmotivated to handle the daily requirements of caring for the elderly and the chronically ill, rendering the family the major site of care provision.

Barriers to Change: Institutional Logics and Financial Constraints

Ideological and financial constraints collectively help situate long-term care in the family rather than in the healthcare field. Institutional logics—“sets of rules, symbols, and patterns of action that coalesce around distinguishable institutions and that serve to organize and provide meaning to behavior” (Friedland and Alford Reference Friedland, Alford, Powell and DiMaggio1991; Thornton and Ocasio Reference Thornton and Ocasio2008; Thornton, Ocasio, and Lounsbury Reference Thornton, Ocasio and Lounsbury2012; Chiarello Reference Chiarello2015, 93)—undergird an individualistic, culturally supported ideology that relegates long-term care responsibilities to family members. This ideology relies on “legitimating frames” that support the status quo while simultaneously offering a framework for mounting resistance through “discursive integration” with rights discourses. Levitsky explains that advocates can render collective action frames more palatable to caregivers by tethering them to legitimating frames, effectively “starting where people are at” (17). This provides a pathway for claiming resources without shirking family obligations and explains why caregivers support models of state assistance that reward hard work and are designed to supplement familial resources.

Regarding ideological constraints, powerful cultural narratives of family obligation legitimate long-term care within families, so cultural narratives that support positioning eldercare outside the family are easily overlooked. In particular, medical logics that justify treating aging as a disease to validate medical intervention and social welfare logics that emphasize citizens' collective obligations to their elderly population could compete with familial logics to shift the locus of care provision. The fact that they do not indicates the strength of family-oriented cultural frames and, according to Levitsky, caregivers' unwillingness to see other countries' models of caregiving as frameworks for their own.

Regarding financial constraints, long-term care's lack of profitability also explains its locus within families rather than healthcare. Before medicine was firmly established as a legitimate institution with a monopoly over healthcare provision, framing a wide variety of conditions as medical boosted physicians' reputations and legitimated their power (Freidson Reference Freidson1970; Larson Reference Larson1977; Starr Reference Starr1982). Today, medicine embraces those conditions that are profitable while eschewing those that are not (Perry and Stone Reference Perry and Stone2011; Brody Reference Brody2014; for an earlier treatment, see Relman Reference Relman1980). Because long-term care has historically been situated in families and has been provided for free, there has been no professional stake in providing that care. In the absence of a social movement advocating for changes in financing, healthcare professions steer clear.

Distinguishing Financing Long-Term Care from Providing Long-Term Care

Although the caregivers Levitsky studied envisioned government assistance as a supplement to familial resources, other potential models exist that would offer medicine a greater role in care provision. This raises the related questions of who pays for care and who provides care and how institutional logics help to support specific institutional practices in terms of payment and care provision. Shifting the responsibility for caregiving from the family to the state unilaterally is not possible because people remain entrenched in existing arrangements. Just as changing ideology about caregiving requires discursive integration to link old logics with new ones, a similar kind of integration is necessary to change social arrangements for care provision. This does not mean substituting the state for the family but, rather, integrating state assistance into the status quo.

Most of Caring for Our Own focuses on the question of state financing for care, leaving the question of who provides care relatively open. This is largely due to Levitsky's finding that caregivers are resistant to yielding power over family members to the state. Politically mobilized study participants favored an entitlement program designed to supplement the family's care provision rather than replace it. They envisioned the state paying for this kind of care as a means of rewarding people who had spent their lives working and paying taxes. However, even if the state were to adopt this kind of funding mechanism, resolving the question of who pays for care does not eliminate the equally important question of who provides it.

Taking a broad perspective on financing and care models, we could envision two major alternatives: the first is medical management under which care receivers would be treated as patients, cared for by healthcare providers, and funded either privately or by the state, a model popular in Nordic countries that base care on social citizenship (Magnussen, Vrangbaek, and Saltman Reference Magnussen, Vrangbaek and Saltman2009). The second is family management, under which care receivers would be treated as family members, cared for by other family members, and funded either privately or by the state, a “residual” model popular in Western Europe (Lyon Reference Lyon2010). Though some of Levitsky's participants negatively contrasted America's models with European ones, these models generally failed to resonate with caregivers because they were not sufficiently grounded in US social policy (Levitsky Reference Levitsky2014, 109, 142). The first model overlooks family members' desires to control their relatives' treatment and the strongly felt obligation to “care for their own.” The second model requires significant effort and expense on the part of family members, including compromising their career paths and draining their savings. Further, policies that enable the state to subsidize rather than usurp family-provided care assume that someone in the family has the time, energy, and resources to care for family members and would choose to do so if other options were available at a reasonable cost. Given that caregiving is heavily gendered, women disproportionately meet familial obligations regardless of whether programs offer subsidies or time off from work. State subsidy solutions work well with the prevailing ideology of family responsibility, but when “family” means wife or daughter, these policies do little to unsettle the gender gap in care provision. Add to that the fact that women bear greater responsibilities for caring for children and tend to work in less stable jobs at lower pay (Jacobs and Gerson Reference Jacobs and Gerson2004; Bianchi and Milkie Reference Bianchi and Milkie2010; Hochschild and Machung Reference Hochschild and Machung2012), and even subsidized care could have damaging effects on women's career opportunities.

Based on Levitsky's findings, the caregivers' movement that has not yet come to fruition would challenge mechanisms of financing caregiving while leaving mechanisms of care provision relatively intact. Applying Levitsky's findings to provision of care, we can ask how discursive integration could alter assumptions about who performs the care. If the funding structure for hospitals does not change, hospitals remain motivated to release people “sicker and quicker” (Levitsky Reference Levitsky2014, 48; Estes and Swan & Associates Reference Estes and Swan1993; Arras and Dubler Reference Arras and Dubler1994). This necessitates sophisticated medical care in the home. Do new models imagined by potential activists include a larger role for the healthcare system in providing homecare services or do they require greater training for lay caregivers? If it is the former, who would these caregivers be and how would they be trained and regulated?

Relegated Jurisdictions

Professionals retain power by staking claims over specific jurisdictions and protecting them against competitors (Freidson Reference Freidson1970; Larson Reference Larson1977; Starr Reference Starr1982; Abbott Reference Abbott1988). In his landmark book The System of Professions, Abbott (Reference Abbott1988) theorizes a set of six “settlements” that result from jurisdictional disputes, each of which involves a single profession retaining control of the jurisdiction or some division of labor across professions. Levitsky's work tacitly adds to this literature by depicting a case in which professional labor is relegated to lay caregivers who lack the training and desire to engage in complex medical care. If, as Brint (Reference Brint1996) claims, we in fact live in an “age of experts,” then how can we explain the foisting of professional work onto lay caregivers? If professions are indeed as protective of their jurisdictions as the sociological literature suggests, then how can we explain the easy surrendering of professional tasks to the public?

The answer includes not only the economic factors discussed above, but also new ways of mobilizing lay resources as substitutes for professional work. Levitsky attributes the allocation of medical tasks to family caregivers to the previously discussed changes in hospital financing for Medicare and Medicaid patients from fee-for-service to prospective payment models. Prospective payment systems incentivize hospitals to release sick patients requiring ongoing medical care because profit derives from discharging patients early, but it is the availability of caregivers in the home that makes this early release possible. As Levitsky notes, “caregivers today are often tending to patients with hospital-level needs” (47). Further, they do so with little to no instruction, effectively performing nursing work without training.

This suggests the presence of a category not theorized by Abbott—that of relegated jurisdictions. Unlike the settlements Abbott's research captures, and unlike processes by which professionals distance themselves from “unpure” or “dirty” work by allocating it to lower-status workers (Abbott Reference Abbott1981; Bosk Reference Bosk1992), in this case tasks are not relinquished or shared by occupational groups with similar capabilities. Instead, lay caregivers serve as a repository for the care medical providers do not do and are charged with performing professional work in the absence of professional training or titles. Though a portion of the “dirty work” is relegated to various, subordinated health professionals like nurses, health aides, and hospice workers, what sets long-term care apart is that many of these tasks traverse the medical/familial boundary as family caregivers adopt significant medical responsibilities. Levitsky notes that caregiving is perceived as a ““natural” extension of family roles” (70), but this raises the question of how far roles can extend without breaking. Certainly, professional expertise is necessary for performing some of the tasks associated with caregiving. How do we decide culturally and individually where family duties end and professional intervention begins? Levitsky contends that recognizing this boundary is challenging because it requires acknowledging an emotionally difficult transition in the relationship between the caregiver and the care receiver (70–71). How might nonfamily caregivers help to sustain preexisting familial roles? Roles and interactions undoubtedly change when a family member ages or is ailing, but would professional intervention enable family roles to remain more intact without stretching those roles to (and, arguably, beyond) their max?

Legal and Ethical Implications: A Closer Look at Gatekeeping

Situating care work within specific institutions and relegating care to lay versus professional caregivers draws attention to how law incentivizes various types of organizational gatekeeping. Elsewhere, I have conceptualized healthcare providers as medical, legal, fiscal, and moral gatekeepers (Chiarello Reference Chiarello2013). These categories become salient in Levitksy's case when applied to organizational behavior.

Healthcare organizations' primary duty is to act as medical gatekeepers by deciding who needs what kind of care provided by whom via what mechanism. However, as the previous discussion of jurisdictions demonstrates, control over medical services becomes more lax in economic environments that disincentivize professional care provision and relegate sophisticated tasks to lay caregivers.

Hospitals are motivated in part by financial interests. Therefore, by trying to ensure that the hospital has enough money to operate (and for private hospitals, to turn a profit), organizational members act as fiscal gatekeepers. Levitsky indicates that the task of fiscal gatekeeping varies based on political environment. Under fee-for-service payment systems, fiscal gatekeeping means running as many tests as possible and keeping patients hospitalized for long periods of time. Under prospective payment systems, fiscal gatekeeping means releasing patients before the patient has met the maximum number of days set by the diagnosis-related group (DRG).

To contend with these financing structures, hospitals delegate medical gatekeeping roles to untrained family members. How does this new form of legal gatekeeping reimagine liability? As legal gatekeepers, hospitals and their members are responsible for following laws and regulations and maintaining boundaries among professionals' scopes of practice. Failure to do so poses a liability risk. However, what are the liability implications of releasing a patient who requires significant medical treatment and turning care over to an untrained caregiver? Should something go wrong, is the hospital liable?

With regards to moral gatekeeping, healthcare professionals are responsible for following codes of ethics, notably “do no harm.” According to Levitsky, “many caregivers are not only confused and intimidated by [high-tech] medical technologies, but they often experience a near constant anxiety about mishandling the medical care of their family member” (48). What happens if something goes wrong? Bioethicists should certainly be interested in whether releasing patients into the hands of families, which can result in negative outcomes for the patient and psychological trauma for the caregiver, constitutes harm and is therefore unethical.

Ethical challenges are further complicated by the fact that it is considered unethical for physicians to treat their own family members. “Professional objectivity may be compromised when an immediate family member or the physician is the patient; the physician's personal feelings may unduly influence his or her professional medical judgment, thereby interfering with the care being delivered” (American Medical Association 1993). Yet, by releasing sick patients to caregivers, hospitals require family members to perform medical procedures on their relatives.

In a sense, though, the family also engages in “moral gatekeeping” or at least society serves as a moral gatekeeper regarding how families should behave. Levitsky notes: “We care for our partners ‘in sickness and in health’ and we take care of our parents ‘the way they once took care of us' because it is expected of us. It's what families do. These are powerful—and largely taken for granted—cultural norms. For many, to even admit that long-term care provision is ‘difficult’ is to suggest a kind of personal moral failure—an inability to physically, financially, or emotionally live up to one's commitments to family” (66, emphasis in the original). From a gatekeeping perspective, this means that cultural logics help to enforce a narrative about the morality of family obligations that justifies the lack of state intervention. If even admitting needing help is a moral failing, then mobilization is unlikely.

Financial and legal considerations alter the environment in which medical, legal, fiscal, and moral gatekeeping occur, shaping how organizations fulfill or hand off these gatekeeping responsibilities. The primary result has been the “medicalization of the home” and a shift in costs from hospitals to families (Levitsky Reference Levitsky2014, 50).