Denying Nothingness
The delusion of the nursing home
Harold Braswell
Terence C. Price II, Untitled, 2018
The COVID-19 pandemic transformed our eldercare system from a mere dystopian hellscape to an active producer of mass death. The people who died, as well as those who were outraged by the circumstances of their deaths, were not of any particular party or ideological affiliation. Nevertheless, our country’s nursing homes—“warehouses of death,” in the words of Catholic theologian and professor of social ethics Charles Camosy—emerged from the pandemic receiving billions of dollars in federal funding, as well as robust protection against regulatory oversight.
A strong majority of Americans feel there should be more supports that allow elderly people to live in their homes as they age. They also agree that the care workers who provide this support should be better paid. Finally, and most emphatically, they agree that nursing homes—our country’s inpatient facility of choice for older persons—are not places they want to grow old in, nor where they want to die. This agreement has been long-standing, and it stretches across the political spectrum.
Yet this broadly held agreement has not, for the most part, been expressed as a demand for political change. There have not been well-attended national marches for the abolition of nursing homes or the substantive expansion of public funding for home care. While many Democrats and Republicans agree on the need to change eldercare, such change is not among their top priorities. Eldercare might appear alongside other, more “hot button” issues—such as climate change or the “right to die”—but it has yet to emerge as a driver of policy. One might think that COVID-19 would have changed this. It hasn’t. The pandemic has in many ways strengthened, not weakened, the very institutions that failed. This raises the question of why, in spite of knowing just how terrible our eldercare system is, we seem dead-set on keeping it the same.
This question has been studied by the sociologist Sandra R. Levitsky in her book Caring for Our Own. Levitsky examined the attitudes of current and former family caregivers for elderly relatives. This is a group that has intimate knowledge of the difficulty of such care. In theory, they would be an ideal—if not the ideal—population to advocate for change. But, Levitsky finds, overwhelmingly they do not do so.
A huge part of the problem is how they think of the family. The caregivers Levitsky interviews overwhelmingly believe that eldercare both is and should be the family’s responsibility; indeed, they believe that such care is actually defining of what family is. Were they not to care for their elderly loved ones, they would not be “family” anymore. The act of caring is the very means through which family members are recognized as—and, in a way, become—ours.
This conception of family is a powerful motivator of care, but it also has tragic results. When there is a problem in eldercare—when something goes wrong at home, or when an older person is moved to an institution—the familial caregiver does not attribute this failure of care to public policy or to the action of others. Instead, they blame themselves. On a private level, this can lead to immense feelings of personal guilt and shame. Publicly, it leads to the continuation of the very system that failed both the caregiver and their loved one.
The result is a terrible irony: the very desire of American families to care for their loved ones inadvertently harms the people for whom they care. Changing this requires redefining the meaning of familial care: making political advocacy for better eldercare an essential part of what it means to be a member of a family. For this to happen, there must be a greater public understanding of how our eldercare system produces suffering that is, unambiguously, not the family’s fault.
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The current state of U.S. eldercare begins with the advent of the nursing home. The emergence of these facilities was an inadvertent product of public policy. The Social Security Act of 1935 cut off federal funding for public institutions, which decimated the system of charitable almshouses that had previously housed the elderly. But the law did not provide any funding for at-home care services, the kind that old people would need to live at home. As a result, private rest homes—nursing homes—emerged to care for what was, suddenly, a displaced population.
These homes experienced a gigantic boost with the Social Security Amendments of the 1960s, most notably those leading to the 1965 creation of Medicare and Medicaid. Medicare and Medicaid finally created large, reliable streams of public funding for eldercare. It was in response to this newly opened public spigot that the nursing home that we know today emerged. Nursing home capacity had more than doubled from 1963 to 1973, expanding to 1,174,900 and exceeding the number of hospital beds. Their political power also grew, with both national and local nursing home lobbies coming to exert increasing influence on the eldercare landscape. By the time Social Security, at states’ discretion, began to allow elderly people the ability to receive funding for home and community-based care, it was too late. The nursing home industry had already established itself as the main driver of eldercare in America.
The nursing home industry is not unlike any other multi-billion-dollar industry: its chief goal is turning a profit, but it cloaks this goal under the rubric of ostensibly non-capitalistic “care.” The key trick that the industry must pull, in order to enrich its shareholders, has been to make the “care” it provides its clients as profit-maximizing as possible. To achieve this goal, it has become a trailblazer in understaffing.
Extensive research shows that, to avoid rampant mistreatment, it is ideal that residents each receive 4.1 hours of contact from staff daily. Yet the number of contact hours at the average U.S. nursing home is slightly below that, and at the bottom quartile of facilities substantially so: these homes average around two hours daily of staff-patient contact. This low number is a guarantee of systemic neglect and abuse. According to the nursing home industry, this neglect is due to the low rates of pay per resident that facilities receive from Medicare and Medicaid. To prove this, the industry attempts to assert that it does not, in fact, make a profit, even with its currently low staffing levels, yet this claim does not withstand scrutiny. Indeed, as Vice News has shown, the industry in fact turns billions of dollars in profit, which it then hides through elaborate money laundering schemes. The understaffing is a deliberate business choice.
This choice has had disastrous consequences for residents. Understaffing is responsible for much of the neglect that occurs in nursing home settings and has been a substantial contributor to the high COVID-19 mortality figures, and nonunionized settings had the worst outcomes. Staff have so many clients that it is simply impossible for them to keep up. Even with more favorable resident-staff ratios, the work of caring for the elderly is grueling. With current rates of understaffing, it is cruel to both the residents and those that care for them. For this physically and emotionally demanding labor, done in impossible conditions, nursing assistants are compensated, on average, around $15 an hour, though in the bottom decile of homes—where conditions are likely the worst ones—they make closer to $11. This combination of poor wages and punishing work gives the nursing home industry a yearly turnover rate that was close to 100 percent before COVID and is likely even higher now. These constant changes in residents’ care teams—all taking place in an unrelentingly precarious environment—lead to systemic mistreatment and make it nearly impossible for meaningful caregiving relationships to form. “Care,” without adequate labor support, has morphed into its opposite. The nursing home industry’s very business model is neglect.
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This business is funded by Medicare and primarily—for nearly 80 percent of residents but many families pay for more out of pocket, and are sometimes even sued for the bills. Any attempt at “eldercare reform” that does not tackle, head on, the exploitative nature of the nursing home industry is doomed not just to fail—but to make the problem worse. Indeed, it repeats the same pattern that created the industry to begin with. Breaking out of this cycle requires an approach that works to minimize the role of nursing homes in our eldercare system, while simultaneously transforming them from within.
Outside of nursing homes, effort should be made to create better, adequately subsidized rates for home caregivers and a bigger population of caregivers. This will involve more just immigration laws, because as labor activist Ai-jen Poo has noted, immigration is essential to having an adequate supply of care workers. It will also require better pay and more support for unionization. Finally, it is essential to tackle the institutional bias of Medicaid, which disproportionately directs its recipients to nursing homes, even when cheaper, more effective home care is available—as disability rights advocates have noted for decades. Meanwhile, it will require passing regulations that guarantee workers inside the homes a livable wage and, as Nina Kohn has suggested, raise employer requirements for staff-patient ratios to the optimum level.
Pointing out the political nature of eldercare can help motivate families to advocate for changing the system. But, for many, a barrier to their doing so will be a denial that the system’s neglect and abuse, as it stands, will happen to them. This denial can be supported by racial and economic disparities. For wealthy people, there may be a belief that they can keep their loved ones out of the system because they can afford private-pay home care and higher quality institutional placements. This belief may be true for some, but not many: Jane Gross has chronicled her own mother burning through the $470,000 her mother had saved for care later in life. There is thus a need to recognize that, even for the moneyed, the worst can happen.
Race can be another barrier to such recognition. The geography of nursing homes in America is the same geography as America itself: one that is both racialized and racist. Nursing homes of different qualities are built in different zip codes. The worst nursing homes are those that are made available to poor people of color, who are often only able to finance their care through Medicaid. White Americans, in contrast, have succeeded in sometimes vacating the nursing home system, using other means, such as inherited wealth—accumulated in substantial measure through anti-Black housing discrimination—to pay their way into “alternative” facilities like assisted living. These facilities are hideously expensive, and they often lack the ability to care for the complex medical needs that older people experience. But they give enough of an illusion of escape to facilitate a larger denial of the realities of eldercare writ large.
To upend these intertwined mechanisms of denial, that which has been purposefully hidden away must now be made public. But the role of psychoanalysis in transforming our eldercare system is not solely in working through the cognitive and affective barriers to such a revealing: it is also in comforting those who are already in the clutches of our eldercare system, and imagining the eldercare to come.
Terence C. Price II, Untitled, 2018
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Both these possibilities—making eldercare public and confronting its current reality—are demonstrated in Andrew Stein’s book Longing for Nothingness: Resistance, Denial, and the Place of Death in the Nursing Home. Stein is a Lacanian analyst in New York who has years of experience providing psychodynamic psychotherapy in nursing homes. Both in spite of and because of the limitations of the environmental setting, this therapy can have a very valuable role. This role principally requires attending to what Stein calls the “longing for nothingness.”
Counterintuitively, though Stein observes it in individuals at the end of their lives, he argues that the “longing for nothingness” emerges at life’s beginning. Following Freud, he claims that life originates from the individual’s wish to return to a state of prior inorganic nonexistence or “nothingess.” This desire—which, for Freud, is the “death drive”—is powerful, and so, too, is the individual’s rejection of it. The desire to live is the form this rejection takes, and with that comes the individual’s connection to others and need to create meaning—“something”—in the larger symbolic world.
There is a loss involved in this shift. Following Lacan, Stein claims that to enter into the symbolic world where we create “something” we must cede the raw power contained in our originary death drive. In other words, castration. “The price one pays for not falling into nothingness is to remain in a world of desire in which no desire is completely satisfying or hits the mark.” It is a necessary stage of development. Yet this development is based on a rickety foundation: the barrier that drives the “longing for nothingness” underground is not permanent. If it is shaken, this desire for death will reemerge.
The process of growing older inevitably requires that the individual, to some extent, relinquishes their ties to the world. They lose the very identity that had previously sustained them—an identity based in a level of physical functionality that they likely can no longer fully maintain. This process of relinquishment, however, is dramatically accelerated by the displacement of older people to the nursing home. This home’s very location—apart from their own place of residence and, frequently, community—physically separates them from the sources of meaning that they created over their lives. Even the best-run home generally only provides a partial substitution for gratifications that likely will not be experienced again.
As a result of this, the fire wall that nursing home residents have created against their own desire for death collapses, and the “longing for nothingness” returns. Stein finds this dynamic repeated again and again in the residents he works with: people who spend the final years of their lives assailing themselves with thoughts about dying and wishes for death. This self-punishing psychic reality is a natural product of the nursing home setting.
It is also, Stein emphasizes, a reality that the setting is totally unprepared to address. Overworked staff, while often well-meaning, generally ignore the death wishes of those under their care. At worst, they respond to them with over-medication, hospital discharge, or a twenty-four hour alert. Physical or pharmaceutical restraint are more readily available solutions than caregivers meeting the residents at their point of greatest need. This institutional failure, ironically, further exposes residents to the most brutal aspects of their desire for death, and in the process, it misses that this desire, for all its bleakness, holds something essential: “[B]ehind these death wishes, if we take the time to tease them out,” writes Stein, lies
“an entire, repudiated inner world of fantasies of dying or of other people dying, of things being broken or falling apart, of things being repaired and put back together, and of old remembrances of a destructive cast and of idyllic remembrances of things past.”
In other words: life. A different kind of life than the individual had previously known, but one that, if worked through, provides them with a richness and vitality they may have previously lacked.
It is the work of therapy to facilitate this, providing the resident with security as their world seems to crumble around them, while, simultaneously, exploring the profound and intense form of desire that has been unleashed amid the rubble. Often, it is difficult to do so given both the time constraints and the institutional context, but Stein argues that it is possible to “finally guide the ship of their life to its final destination peacefully.” It is difficult, noble, and essential work—work that should be elevated, celebrated, and valued.
It is also work that we, as a society, have failed to do. Stein’s book, for the most part, does not address this, but his analysis has important virtues in explaining why our eldercare system has developed as it has and why we remain so resistant to changing it. Elderly people, importantly, are not the only ones who experience a “longing for nothingness.” We all do, but outside of the eldercare system this longing is generally much easier to deny. Older people—and the thought of aging—stir it in us, generating an enormous, intolerable anxiety at the awakening of desires that we have structured our lives to avoid. This anxiety makes systemic public eldercare planning both difficult and unpopular. This is, in part, because we take solace from the structure of our eldercare system as it currently exists. This system thrives on separating the elderly from the general population. This is, unfortunately, a highly effective means of keeping our own longing for nothingness at bay.
Recognizing this longing means taking a more realistic understanding of familial caregiving. Rather than take flight into the fantasy of the self-effacing caregiver who can do it all on their own, it requires acknowledging that familial caregiving itself stirs up profound ambivalences that date back to the earliest periods of our lives. It unleashes a tension that is difficult to manage alone.