Homecare in America: The Urgent Challenge of Putting Ethical Care into Practice

Introduction

The American healthcare system is supported by the labor of millions of poorly paid, underappreciated workers, known variously as home health aides, personal care aides, and home care workers. These workers are primarily tasked with assisting their clients – typically older adults and/or people with disabilities – with activities of daily living, which includes anything from bathing, to house cleaning, to cooking meals, to administering medication. At its best, home care can enable people who need assistance with daily tasks to stay at home, which is overwhelmingly preferred to receiving care in a nursing home or similar arrangement.¹ For workers, home care can be a deeply meaningful occupation.² Home care, we contend, is a major social opportunity: a well-functioning home care system would be a profound social boon.

But the American home care system is far from well-functioning. In this article, we make the case that, as the industry is currently structured, home care workers and clients who form caring relationships are going above and beyond what can reasonably be expected of them. We argue that care – of a deep sort – should be the standard, and that significant changes are urgently needed to make such care a reasonable expectation.

We begin with a discussion of the concept of care, informed by literature on the ethics of care, particularly by the work of Eva Kittay.³ Caring for another person, for our purposes, involves striving to promote their well-being out of a concern for their good. We hold this kind of care as a moral ideal, though not one that everyone ought necessarily to strive for under all circumstances. We then discuss the circumstances in which care is properly held as an ideal. In section 2, we detail some of the major shortcomings of the industry and discuss how these shortcomings make it onerous to form a caring relationship. In section 3, we make a number of proposals aimed at remedying these issues. Our proposals largely echo demands made by home care workers themselves; our analysis is meant to lend an additional sense of urgency to these demands. We conclude with some reflections aimed at underscoring that sense of urgency.

We have chosen to focus here specifically on home care workers, rather than the broader class of care workers, which includes aides in nursing homes, assisted living facilities, and other long-term care arrangements. This is partly because we believe the size of the home care industry, as well as the urgency of the issues facing it, justify direct attention from the bioethics community. But also, on a more personal note, the authors – all of whom have made use of home care services, have had family members make use of home care services, or have themselves been home care workers – are more comfortable speaking to the issues of the home care industry. Our collective experiences inform our normative and empirical analyses. However, we hope that what we say here about home care can be meaningfully extended to issues in other caregiving occupations.

1. On Care

In some contexts, the term “care” can refer to an activity, primarily that of attending to needs. The sorts of needs in question will often be physical—for example, caring for a child by bandaging a cut on their arm. But caring as an activity can equally concern social, psychic, or emotional needs. Tucking a child in on time, organizing playdates, and encouraging them to develop a healthy relationship with their emotions are thus all part of caring for a child. Call this the “active” sense of care, or active care. As Kittay emphasizes, “care” in this active sense can be used as an “achievement term”; when we fail to actually make someone better off through our actions, it may be inappropriate to even describe what we are doing as care.⁴

At other times, the term “care” may not refer to an activity at all, but rather to an internal state. We might, for example, say we care for a child to express how we feel about them. There are many sorts of internal states that might be called “care”— caring motivations, dispositions, emotions, desires, and so on. These states all involve a personal concern for the welfare of the other. A caring motivation might be a personal investment in another which moves us to do what is good for them; caring emotions might be joy in their successes, or sorrow in their disappointments. Call this the “internal” sense of care, or internal care.

It is possible to care for someone in either of these senses without caring for them in the other sense. For example, one might internally care for someone by celebrating their accomplishments but not actively do anything to promote them. Alternatively, one might actively care for someone by bandaging up their wounds, but feel indifferent towards them.

Finally, the word “care” can be used to refer to the conjunction of these two sorts of caring. In this richest sense, to care is to attend to the needs of another out of a personal investment in their well-being. To care, in this sense, is to actively care from internal care. When philosophers discuss the moral importance of care, this sense is typically the one they intend.⁵ It seems that there is something lacking when active or internal care is unaccompanied by the other. It is disconcerting, for example, to attend to the physical needs of another only from some non-caring motive (such as to curry favor with them). And, as Kittay notes, it seems to “impugn one’s character” to hold a full set of caring emotions towards another yet never do more than fret over them.⁶ Mere active care or mere internal care will each count as caring, but this fuller care, we claim, is the sort that most enriches our lives.

A final question for an account of care concerns the relevance of the caring relationship. It might be thought that in order to attain the fullest expression of care, the caring relationship must be reciprocal, meaning that all participants must care about each other. But as Kittay points out, caring relationships are characterized by dependence, and a dependent person may lack the capacity to reciprocate care.⁷ We agree that the fullest expressions of care can be found in such reciprocal relationships; however, it is worth emphasizing that refusing to care about another is different from being unable to care about another. And relationships in which one person cares, and the other refuses to, are surely far from ideal. We propose that care in its fullest sense is found only in relationships characterized by qualified reciprocity, which is to say, when all parties care about each other to the extent that they are able.⁸

Perhaps the paradigm of care, in our society, is the close, intimate sort which is (ideally) found in romantic and familial relationships. But surely, ethical care is not limited to these contexts. To illustrate, consider the nurturing personal attention a good teacher pays to their students - this too is an expression of ethical care. Indeed, intimate familial care is likely inappropriate in the school setting. When we assert that home care workers should care about their clients, we do not mean to suggest that they must form quasi-familial bonds with them. It is especially important to respect this distinction in discussing the realm of home care, in which claims of treating workers “like family” can conceal exploitation and abuse.⁹ Rather, we have in mind an ideal of professional care. Such care will presumably start with a commitment to the job, to being a good home care worker.¹⁰ When successful, the relationship between worker and client will evolve over time into an ethically caring one, characterized by both personal investment and professional distance.

1b. When is Ethical Care a Salient Ideal?

So far, we have drawn the contours of an ideal of “ethical” care as attending to another’s needs from a standpoint of personal investment in the context of a professional, reciprocal relationship. Many caring relationships will not, and need not, live up to this ideal. For example, a waiter may actively care for someone (e.g., by bringing them food) without having any particular investment in their well-being. Their relationship will then fail to embody ethical care—but this is not a moral problem. The ideal of ethical care is not applicable to waiters - we do not, or should not, expect them to care internally for diners, who cannot reasonably expect more than polite, attentive service. An exceptional waiter’s efforts to care about their customers’ well-being may be morally praiseworthy, but it is not morally required that an effective waiter be invested in their customers’ well-being.

Even when ethical care is relevant as an ideal, it need not be the case that a failure to live up to it is a moral failure. Material constraints, like physical distance, may hamper one party’s ability to attend to the needs of the other. Under the circumstances, they may not be blameworthy for this—especially if they do what they can for the other. In our discussion of the ethics of care, we do not mean to imply that anyone is under an obligation to fully achieve ethical care. Rather, we are interested in those contexts in which one ought to strive to achieve it. In such circumstances, we will say that ethical care is relevant, or salient, as an ethical ideal. Our more specific questions, then, are: should home care workers and clients be expected to strive after the ideal of caring? If so, when and why?

An immediately attractive option would be to say that, for home care workers—as for the rest of us—care is always a salient ideal. After all, care is a good thing – surely we ought to be trying to promote it whenever we can. But at a closer look, this suggestion will not do. Recall the example of the waiter. Servers are not obliged to care about their customers. The customer has no complaint against the waiter for failing to exhibit a personal investment in them. There are many other types of relationships in which the ideal of ethical care is not applicable. We can hardly expect ordinary people to care about everyone they interact with, and it would be unreasonable to hold this up as a practical ethical ideal.

A more promising approach will start from considerations about specific situations in which the ideal of ethical care appears to be salient. Consider the context of certain special kinds of relationships. Parents, for example, ought to care for their children. Similarly, many nurses and nursing ethicists hold that striving toward what we call ethical care for patients is an essential part of the profession.¹¹ In both contexts, ethical care seems appropriate as a moral ideal which one should strive towards. Further philosophical inquiry would be needed to fully establish the conditions under which ethical care is salient. Going forward, we will take it for granted that ethical care is not always salient, but that it will be when a special relationship or occupational context makes it so.¹²

This granted, if home care workers ought to strive for the ideal of ethical care, the reason why they ought to is presumably to be found either in the special relationships they have with their clients or in the norms of their occupation. The critical questions, then, are: can home care workers have the sorts of special relationships which make the ideal of ethical care salient with their clients? Will doing so involve an excessive degree of self-sacrifice on either’s part? And, is home care the sort of occupation which could make care a salient ideal? Given that an ideal can only be salient if it is reasonably possible to live up to it, are home care workers and clients enabled to care about each other? The second section of this paper is dedicated to answering these questions.

2. Care in the Home Care System

Let us engage in a thought exercise informed by empirical research into the structure of the home care industry as well as our lived experience serving as and employing caregivers. Imagine that you are a young person who deeply values care and, for that reason, decides to pursue a career in home care work. Now, it is worth emphasizing that your reasons for pursuing this career are deeply atypical. Home care workers typically enter the field primarily out of economic necessity, not from this sort of caring motivation. Still, this perspective will be useful to take up for the purpose of focusing on the ways in which the home care system enables and obstructs caring relationships.

Before your job starts, you might encounter confusion from your friends and family who wonder why you want to be a home care worker. The more respectful among them might concernedly review the statistics of the home care industry with you—low pay, little choice in working hours, few benefits, and high turnover are the norm.¹³ You could be so much more, they might urge, than a home care worker. The less respectful might ask why you would pursue a career in “wiping ass.”¹⁴ Caregiving is among the least respected professions in American society, and that assessment alone can sting.

But imagine that you don’t listen to your friends and family. Your next step would be to look for a position. Here you have some advantages—demand for paid caregivers is outpacing supply, and the industry has trouble attracting and retaining workers.¹⁵ More than likely, you would obtain an interview and a position quickly. The next step would be your training.

What is training typically like for a home care worker? It depends on where you are. Different states have different standards for training, and agencies comply with these standards to greater and lesser extents. Not every state requires that home care workers be licensed in any sense; of those states that do, many do not require training in all the core competencies of the position.¹⁶ Home care is generally the least regulated sector of the healthcare industry, so it is difficult to make accurate generalizations about the quality of training programs. But we do know, from experience, that training programs may be of seriously low quality. In Coleman’s initial training, for example, significant time was dedicated to viewing an offensive clip from the TV show “Mad TV” featuring a boss who refuses to believe a worker’s sexual harassment complaint on the grounds that she was not attractive enough to be harassed. Less time was dedicated to training in essential job tasks; he was hardly trained, for example, in administering medication, despite being required to do so almost daily.

Throughout your training, you might observe that the vast majority of your new colleagues will be women, relatively few among them will be white, many will be immigrants to the United States, and almost all will be socio-economically disadvantaged. Stepping back, you will come to realize that in the American context, care has long been associated with social marginality. In the Antebellum South, for example, this was expressed in the construction of the archetypes of slave-as-maternal-figure—the “Mammy” or “Aunty” who attended to her masters and their children with (servile) care.¹⁷ Such archetypes have a way of finding themselves into the cultural lexicon surrounding care.¹⁸

Later, in the course of the transition to a wage-based economy in the United States, white workingmen petitioned their employers for better wages, arguing that such increases were needed in order for their wives to stay home and devote their attention to care for their families.¹⁹ As such, care came to be seen exclusively as “women’s work.” Where those women had the means to hire help with domestic work, they generally turned to poorer women in another early instantiation of the care economy. Often, these early care workers were immigrants—a trend that continues into the present.²⁰ Social conventions regarding care work led to an expectation that care is to be carried out by women and socially marginalized people. So it should be no surprise that the typical employee of the (generic) home care agency at which you are employed is a poor, immigrant, woman of color.

A few days after your training session, you get a call from your supervisor informing you of your first assignment to a client. This is a real milestone, and it should excite you! But at the same time, it comes with its own set of hazards, especially because in all likelihood, you have no agency over who you are assigned to. Some of these hazards will be logistical: your client may not live anywhere near you, meaning that you will have to commute hours to get to their residence. Indeed, Coleman commuted two and a half hours to his first client.

Other hazards will be moral. Because you have limited-to-no control over who you are assigned to, there is no guarantee that your personalities will mesh. You may be unwittingly entering into a relationship with someone who cannot stand you, or vice versa. Further, each client, of course, has a unique life and social context. You may be thrust into a complicated and difficult family dynamic, which you will be expected to navigate gracefully; you may be expected to work with doctors, therapists, state workers, and others who do not know you and may not trust you; your client may have had bad experiences with previous home care workers and may immediately regard you with suspicion. If your training was inadequate, you may not even be well-equipped to attend to your client’s physical needs, which can mean that, at least until you get your bearings, you will be providing inadequate care, albeit not necessarily through any fault of your own.

In the worst-case scenario, your client may be abusive. Ai-Jen Poo relates the story of a caregiver named Diki:

Diki worked as a live-in for an employer who often woke her at two a.m. to demand a cup of tea; who gave Diki just a mat on the living room floor for her sleeping quarters; and who, as the ultimate bargaining chip, held on to Diki’s passport.²¹

Such cases, Poo notes, are neither rare nor exceptional. Indeed, as Cati Coe argues, the home care relationship is frequently interpreted through the archetypes of slavery to this day. Coe relates the stories of 53 West African care workers, every one of whom has been subject to “deliberate humiliation . . . through racialized language or practices in which they or a friend were “recognized” as an animal or a slave.”²² Chances are you or your close co-workers will encounter this sort of treatment at one time or another. And chances are that you will have little recourse in dealing with it, especially if you are socially marginalized in the way that most caregivers are.

There will be a great deal of uncertainty in your first assignment to a client. However, you can be certain your client will be part of a socially vulnerable population. The majority of clients in the home care system are older adults, and virtually all of them are limited in functionality and/or disabled in other ways, thus comprising two of the most marginalized populations in our society. Clients have to navigate the same complex institutional systems that you do, and their lives or livelihoods hinge even more dramatically on the whims of faceless, potentially hostile bureaucracies. Further, let us not forget, clients’ lives can hinge on you. Your client may not be well-positioned to reciprocate care, even in a qualified sense. If you or one of your colleagues abuses or neglects a client, they are not likely to have any meaningful recourse. These are but some of the challenges of ableism and ageism you and your client will likely confront.

Although there are hazards on the path to forming a caring relationship with your client, it is not impossible to do so. Indeed, caregivers and clients are forming these sorts of connections every day. Let us imagine you successfully navigate the practical and emotional pitfalls we have laid out and come to a workable relationship with your client. How, then, can you move beyond this to a fully caring relationship?

Sometimes, people come to care about one another spontaneously and naturally, but there is no guarantee of this happening in any relationship. Further, as philosophers have long argued, it is not possible to force yourself to care in the internal sense. Immanuel Kant writes:

Love is a matter of feeling, not of willing, and I cannot love because I will to, still less because I ought to (I cannot be constrained to love).²³

Kant’s observation has merit. At the same time, it is not as though we have no agency over our internal states. Over time, it does seem that the way we care, and who we care about, are to some extent up to us. In The Right to be Loved, S. Matthew Liao suggests a number of methods by which we can learn to care.²⁴ Two such methods involve what Liao terms “internal control”—meditation on and contemplation of the reasons to feel one emotion or another, using these reasons as internal motivation to bring about the emotion. Another method involves “external control”— deliberately placing yourself in situations that reliably induce the desired emotion (church services might induce piety, volunteering might induce compassion).

In your case, you might dedicate some of your time to reflecting on the nature of your relationship with your client, on the importance of the work with which you have been entrusted, and on your client’s intrinsic human value. In so doing, you are sure to recognize that caring for another person—in both its internal and active respect—is hard work, especially for caregivers. You may wonder whether you and your client are being enabled to undertake this hard work.

The answer is a resounding no. Many things can interfere with the formation of an ethically caring relationship. Stress can hinder your ability to do anything for your client, much less care for them. Home care work is among the lowest-paid American occupations, with the average caregiver earning around minimum wage (the lowest among all healthcare workers).²⁵ It is hard even to support one person on the American minimum wage, and harder still to provide for a family or send money to relatives abroad, as many care workers do.²⁶ Caregiving is also a notably dangerous occupation. Along with psychiatric and nursing aides, home care workers are consistently among the most frequently injured occupation groups in America.²⁷ Only one in three receive any form of health insurance from their employers, meaning that should such an injury occur, you will likely be expected to bear the enormous cost of American health care by yourself.²⁸ You will undoubtedly be exposed to emotional stresses, for example, when comforting a client during a health scare, or family members after a client’s passing. These are among the reasons that at least one in three care workers leaves the industry each year.²⁹

As you will come to recognize, the kind of full caring relationships that you seek require conditions beyond a low-stress environment. For example, the formation of a caring relationship requires time, time for the parties to come to know and relate to one another. In general, however, caregivers have little control over their schedules. You may be assigned to one client for a few days or weeks, then abruptly reassigned with no say in the matter should your agency deem some new arrangement more efficient. Even if you are able to stay with one client for the long term, in the back of your mind, you will know that you could be reassigned. This sort of condition is not conducive to ethical care, and neither is the micromanagement and/or surveillance to which you will be subject. At the root of this is the reality that much of the care sector is run on a for-profit basis, with many agencies being non-unionized—and caring (in the full sense) can interfere with the agency’s business model.³⁰

Reflecting this profit-seeking orientation, caregiving agencies frequently have policies that significantly restrict the kinds of care tasks and interactions that can take place in home care settings. For example, home care workers can be prohibited from cutting a client’s fingernails because of the liability involved in using nail clippers. While concerns about liability may be legitimate, this kind of policy makes it harder to care for clients. There is a considerable risk of bodily injury from being scratched by nails which have not been groomed. From the client’s perspective, it may be difficult, if not impossible, to leave the home for regular manicure appointments. This example is not hypothetical; it is drawn from Kevin’s experience as a client of a home health care agency. Further policies restricting the giving of gifts between home care worker and client or prohibiting the exchange of cell phone numbers may protect an agency from unwanted liabilities but can make it very difficult to cultivate caring relationships.³¹

Now, say you try to fight for better conditions, for yourself and for your fellow caregivers. If you do, you will likely face the reality that the interests of caregivers and clients are often, in this system, mutually opposed. In the most immediate, economic sense, caregivers have an interest in receiving the best pay they can for their labor; whereas clients, the vast majority of whom are already struggling with the financial burdens of aging and/or living as a person with disabilities in the United States, have an economic interest in spending as little as they can for the care that they need. The consequence of this is that while striking and other labor activism will in many cases be in your best interest, such activities can have the effect of pitting you and your client against each other, so long as increases to your pay will intensify your client’s economic burden. Striking will also prevent you from providing care for your client, and chances are that they will struggle to work around your absence.³²

The authors have personal experience of this harsh reality from the client’s perspective as well. Kevin is a young professional living with cerebral palsy. He recently relocated to the San Francisco Bay Area where home care agencies usually charge rates between 35 and 55 dollars an hour. One of his recent caregivers threatened to deny care unless Kevin paid him an additional 20 dollars on top of what the agency was paying. This demand was prohibited by the agency contract, but Kevin initially did so for fear of being otherwise without care. He later fired the caregiver and the agency.

This story illustrates the hazards of the home care system’s pay infrastructure. Even though the agency might be charging a considerable hourly fee, very little goes to the caregiver. In turn, clients can find themselves in vulnerable situations with what sometimes feels like “no way out.” Even in other situations with independently hired caregivers, Kevin has felt limited in the degree to which he can advocate for well-deserved pay increases and the like because the funding for his caregivers comes from Medicaid. Although Kevin recognizes his obligation to advocate for his caregivers as a way of caring about them, institutional barriers make it harder to do so.

There are, then, substantive obstacles to forming the sort of warm, deep, ethical caring relationship that you set out to develop with your client. Even if, despite these difficulties, you do manage to form such a relationship, it will be continually challenged. A lack of paid vacation and sick days, and a lack of opportunities for advancement can lead to chronic stress, contributing to the burnout that plagues the home care industry.³³ Structural changes to the bureaucracies that you operate within can undermine your ability to proceed. For example, a major change to Medicaid could throw your entire work-life into disarray, significantly altering your hours and duties; a cutback to Medicaid could significantly reduce your hours, or eliminate your job entirely.

In the end, would anyone blame you if, like millions of caregivers before, you exited the industry? We think not.

In one way, the picture is not as gloomy as the one we have painted here. Even in its broken state, not all caregivers burn out and leave the home care system. At this very moment, millions of kind, generous, hard-working, and caring people are providing deeply needed care to older adults and people with disabilities around the country. These workers are providing this care despite the system, not because of it. Indeed, we believe that at present, home care workers and clients who manage to care about each other in the full, ethical, reciprocal sense are going above and beyond what could reasonably be asked of them. Ethical care should be the standard – home care workers and their clients should be enabled to strive after it. The rest of this paper will offer some considerations on how the industry might be reformed, geared at enabling home care workers and clients to fully care for each other.

3. Reforms to Enable Care

In the last section, we surveyed some especially formidable barriers that might stand in the way of forming a caring relationship in the full sense of the term for any given worker in the home care industry. These barriers must be removed if ethical care is to become the salient ideal in care work, as it ought to be. Here, we make some suggestions as to how these conditions might be ameliorated.

Let us begin with the ways in which home care workers and clients are directly prevented from forming caring relationships. These include the sorts of institutional policies that make it harder for home care workers and clients to interact with one another such as “softer” forms of restriction like micromanagement and unchosen reassignment. In one way, the solution to these problems is straightforward: home care agencies should remove these policies, and institutions like Medicaid should do what they can to restrict them. But in another way, that sort of reform will not go far enough. Simply not preventing caregivers and clients from forming caring relationships is not enough; rather, they should be encouraged and enabled to do so.

How might this be accomplished? On the one hand, institutions with a stake in home care should take seriously the challenges discussed above which make caring hard work. We envision, for example, training programs in home care agencies aimed at enabling both active and internal care. Enabling care would involve equipping caregivers with the skills they will need on the job, promoting the methods that Liao lays out, and giving caregivers the opportunities and resources needed to reflect on the nature of care and their work.³⁴ In certain ways, we believe that institutions should take on a larger role in enabling care in the care industry; in others, we believe that they should take a step back and give caregivers more autonomy over their work lives. Caregivers, as those with the most immediate experience of caring as a vocation, are in the best position to identify what care in their professional setting involves and requires. Excessively top-down management structures are thus liable to obstruct ethical care. In the individual case, this means that caregivers should be micromanaged less and given more professional leeway in carrying out their jobs. At the organizational level, incorporating caregiver expertise means having caregivers at the table when major decisions are made. For example, experienced caregivers should be actively involved in designing the improved training programs we advocate for.

Caregivers have been calling for better training for decades. In 2010, the National Domestic Workers Alliance saw caregivers ask for more training in the care of older adults.³⁵ This recent reform initiative is but one of many throughout US history that have occurred in tandem with broad movements for social equality on the part of immigrants, racial minorities, and women. In cases where such movements have been successful, the reforms have often been at the level of local communities or states and are rarely scaled up to the level of federal policy.³⁶ In this light, our call is not addressed only to powerful entities in the home care industry. More pressingly, we call on activists, policymakers, and voters to support the rights of home care workers to fight for their own rights. In particular, we believe that it is ethically imperative that home care workers be encouraged and enabled to form unions and to collectively bargain with employers.³⁷

Another class of barriers to care includes sources of undue stress for caregivers. The sources we mentioned include the lack of benefits for home care workers such as healthcare and time away from work, and, especially, the low wages that mean home care workers are often struggling in ways that go well beyond the job site. Such stresses can prevent caregivers from engaging in what we have argued is the hard work of creating a caring relationship. If we are to get any traction on the problem of caring, home care workers must be paid a living wage; if one cannot support oneself, then all other questions, including that of caring, are likely to fall by the wayside. Home care agencies, then, must pay these wages, and Medicaid/Medicare funding allocation formulas must enable them to. The same holds true for other benefits like vacation time, sick leave, and health insurance.

Finally, we need to address those factors which can pit clients and home care workers against each other. These can arise when the client is the one responsible for paying the caregiver. In such cases, a client may feel that it is in their economic interest that the caregiver work as many hours as possible for as low a wage as possible. But clients and caregivers can be put into conflict by the systems they operate in even without such a direct conflict of interest. Even if there are no practical divergences between a care worker’s and client’s interests, the atmosphere of scarcity and conflict in the world of home care can produce an expectation on either party’s side that the other is out to take advantage.

We think at least three steps are necessary to overcome this last set of barriers. First, we doubt that any progress will be made on this issue until home care workers are compensated in a way that is commensurate with the value of their work. If caregivers were not paid poorly in the first place, the economic pressure hanging over them would be greatly reduced, thus heading off one sort of conflict with agencies. But it is imperative that the costs of this reform not be placed solely, or even primarily, on clients. Home care is very expensive for clients as it is, and increasing clients’ economic burden would be merely trading one injustice for another. Further, such a move would only intensify conflict between clients and caregivers. Responsibility for paying these higher wages should instead fall on agencies currently profiting from the system and federal programs like Medicaid. Beyond this, caregiver unions and advocacy groups, once established, should work alongside advocacy groups for older adults and people with disabilities towards creating an atmosphere of trust and ensuring that the interests of all are provided for.

We acknowledge that the tensions, and the potential for conflicts between the interests of caregivers and recipients, are not exclusively artifacts of the home care system organization. It is the tension between protecting a vulnerable group from exploitation while recognizing and rewarding quality in the delivery of services by individual members of that group to members of another vulnerable group. Unions tend, not unreasonably, to be suspicious of individual bargaining, fearing power imbalances, while clients and their representatives understandably want to encourage and reward high quality service. It is instructive to compare the debates between teachers’ unions and school administrators/parents over merit-based pay. Parents want better teaching for their children, but teachers’ unions worry that informal merit-basing will permit abusive or exploitative discretion by administrators. By the same token, formal evaluation by standardized tests may not accurately assess merit, penalizing creativity and innovation.

In our case, we must recognize that while the current system disserves both caregivers and clients, reforms may differentially serve one group at the expense of the other. There is no wholly ideal solution, rather only good-faith discussions, negotiations, and experiments, on the distribution of burdens and risks. Some unfairness is inevitable, but it can be drastically reduced by empowering both groups to protect their interests.

The first three barriers to ethical care we have identified in the caregiving industry are mainly practical, which is to say, they have their roots in the problems of the structure and infrastructure of the home care industry. But we should also be sensitive to the social context in which this industry exists. In American society, care has traditionally been undervalued. It has been long considered “women’s work” and too intimately associated with this nation’s legacy of slavery. No specific policy, perhaps, will rectify this. Still, in the absence of a cultural shift towards embracing the value of care, it is hard to see where the willpower to implement any major reforms will come from.

How might this cultural change take place? Partly, we think, through discussions like this in fora like the Hastings Center Report.³⁸ As academics, physicians, and policymakers, bioethicists have some say in the way that our culture is constituted. The time is ripe for inquiry into the nature, value, and practice of care. We hope that readers will be inspired to reflect on the questions like those invoked here.

Why, and when, is care valuable? What does it mean to care in a professional context, where emotional distance and excessive closeness can each damage the relationship? How can we enable care, in others and in ourselves, in a society which fails to value it properly? How can a client and a caregiver of different racial, ethnic, or socioeconomic backgrounds work together to form a caring relationship in a racist, sexist, ableist world? These, and many other ethical and practical questions, are beyond our scope of inquiry. We hope that our analysis motivates bioethical scholarship to further scrutinize the inequalities present in and exacerbated by the American home care industry.

We have some optimism, too, about the prospect of policy change effecting cultural change. If caregiver unions proliferate, and the economic position of caregivers improves, then we can expect care workers to be at greater liberty to speak out about the value of their work. In the absence of severe economic pressure, caregivers may find themselves with more time and energy to spread awareness of the normative importance of care, and unions could amplify that message for other under-appreciated professional services like teaching and nursing. While the presently pervasive devaluation of care may be an obstacle to the sorts of policy changes we hope to see, progress on the issues of the home care industry may very well redound to progress towards a more caring society.³⁹

Conclusion

We conclude with some reflections on the relative urgency of the problems we have identified here. We have been primarily concerned with showcasing the dire conditions in the home care system, and with arguing that, given these barriers, it is unreasonable to expect caregivers and clients to strive to care for each other, at least not in the full sense of care that matters most to ethics. But home care is hardly the only broken part of American healthcare—skyrocketing drug prices, the growing nurse and physician shortage, and the opioid crisis come to mind. Beyond the sphere of healthcare, we find ourselves in a society divided by racial, ethnic, and international conflict, situated on a rapidly heating planet. Activists have limited time on their hands. Ought they to spend it on issues in home care?

We respond in the affirmative. It bears repeating that home care workers are now, for millions of people, the first and most present line of healthcare response. The dire conditions which we have discussed are day-to-day realities for a huge proportion of society’s most vulnerable members—and these numbers will only increase as the population ages.

But to take a wider view, we should remember that care is at the bedrock of our lives. Every one of us requires some degree of care if we are to make it to adulthood; still more if we are to flourish as individuals. Indeed, care should be fully saturated throughout our lives. And, particularly relevant in this context, it should inform the way that our society is structured. Can a healthcare system in which care is devalued deliver good results, at any level? Can a society in which care is devalued hope to tackle systemic racism, climate change, or war? Activism towards reform in home care, then, is necessary not just in its own right, but also as a way of affirming the social value of care, and thus of moving towards a more caring society.⁴⁰