Economies of Dying

Scarcity as Morally Neutral

Robbins’s aforementioned definition of economics conceptualizes scarcity as morally neutral. Robbins uses scarcity as a metaphysical notion: the world’s resources are finite irrespective of human agency or socio-historical context. Consequently, moral views may influence demand for different goods under conditions of scarcity, but scarcity in and of itself is devoid of moral value. Demand for luxuries or ecclesiastical masonries may change according to the virtues that societies attribute to conspicuous consumption and asceticism, respectively (Robbins 1945). But, the finitude of resources is a defining feature of economic life that cannot be evaluated morally.

This view is shared inside and outside scholarly circles. In his ethnographic account of two intensive care units, Zussman (1992:100) documented clinical staff’s ethical concerns “about the ways in which resources are allocated. If there are only a limited number of beds in an intensive care unit, who should use those beds?” (see also Christakis 1999). Ethicists have treated the fact that “some beneficial health care services are simply too expensive to provide” (Asch and Ubel 1997:1668) as deriving from objective and unavoidable constraints. In line with Robbins’s framework, they do not apply moral judgment on scarcity itself, but rather on the choices made under the objective constraints of scarce resources. Moral debates emerge about how much to spend on different types of care given finite resources, but the finitude of resources is an arithmetic fact, uninfluenced by moral sentiments.

Scarcity as Morally Negative

In some cases, however, scarcity is itself moralized. Rather than an objective and natural constraint, it is understood as a social and political construction whose consequences are avoidable. In such instances, scarcity is often moralized negatively: when shortage can be avoided, it is hard to morally justify its existence. The historical transition that Thompson (1971) describes illustrates this point: bread scarcity, which was initially perceived as an inevitable outcome of natural causes (e.g., droughts), became morally illegitimate once it was recognized as deriving from inflated prices.

Negative moralizations of scarcity often develop when people identify scarcity as an outcome of disputable social choices. Critical health care scholars, for example, argue that U.S. health care is rationed by ability to pay; consequently, although health care resources exist, the market makes them inaccessible to the economically disadvantaged (Hoffman 2012). This stance problematizes the otherwise-assumed inevitability of scarcity. As Mechanic and McAlpine (2010:153) observe, “the inclination to think of rationing solely as distribution of an unavoidably scarce supply . . . misses the large number of policy and service decisions that determine what care people can receive.” The moral value of scarcity is thus closely linked to the mechanisms used in allocating resources: when allocation is morally contested, scarcity is likely to be challenged as well.

The negative moralization of scarcity has implications for the moral attributes of markets in general, and for the moralization of prices and commodities in particular. Advocates of commodification rely on the theory that commodifying goods increases their availability and that this may be a way to avoid scarcity. Insurance companies, for example, positively moralized life insurance by presenting it as a way to ensure one’s family’s well-being after one’s death (Zelizer 1978). Conversely, critics of commodification present commodities as creating scarcity. Commodification of commons such as land (Marx [1867] 1976; Polanyi [1944] 1956) and non-market goods such as informal and unregistered housing (Mitchell 2005) are typically linked to political projects of dispossession that create dearth.

The moralization of pricing and valuation is similarly connected to scarcity. Proponents of market solutions to natural resource management contend that pricing goods such as water would make people value them accurately and help address the water shortage facing many developing countries (Goldman 2005). Opponents of these solutions stress that assigning prices to previously non-monetized goods creates socially produced scarcity (Bakker 2007): conditioning access to goods on people’s ability to pay for them limits these goods’ availability (cf. Espeland and Stevens 1998).

Such moralization projects of prices and commodities are based on the assertion that scarcity is inherently negative and there is a moral obligation to avoid it, through commodification and pricing, or through de-commodification and the elimination of prices. Debates over the morality of commodification and pricing rely on a consensus regarding scarcity’s negative moral value.

Scarcity as a Moral Necessity

A third moralized form of scarcity is the moral necessity. Several accounts document cases where scarcity is construed as a morally necessary sacrifice that must be made to abide by certain moral principles. In these cases, scarcity is an outcome of moral views that determine the degree of scarcity—that is, the resources available in a certain economy.

Healy (2006), for instance, shows how moral critique and resistance to the commodification of bodily goods gave rise to a gift economy, in which whole blood and organs are donated rather than sold. This gift economy provides a scant supply of organs and blood, compared to what a fully commodified market economy would presumably provide. The moral concern over profaning the sanctity of the human body—and the appreciation for an economy that relies on donors’ altruism—limits the supply of organs and blood and establishes the degree of scarcity in this economy.

Fourcade’s (2011) account of the valuation of nature resonates with this insight. Comparing how French and U.S. litigants sought compensation for environmental damages, Fourcade shows that French litigants faced critical challenges in quantifying the value of nature and expressing it in monetary terms. The moral reluctance to convert a sacred and sentimental notion such as “nature” into a dollar amount limited what could be demanded in monetary compensation for contaminated beaches and dead marine life.

In such cases, scarcity may have detrimental effects, but it is framed as a necessary moral sacrifice: better outcomes are relinquished because of the reluctance to commodify or price what is sacred. Yet, a pragmatic reading of these accounts would doubt the necessity of this sacrifice; Healy raises such doubts explicitly when proposing to carefully and moderately add certain market features to the donation economy of organ transplants to increase organ supply. Although taken as a moral imperative, scarcity in and of itself is considered negative. But can scarcity be positively moralized? And if so, how and under what conditions?

1950s to 1970s: Intellectual Origins of the U.S. Hospice Movement

The social organization of death in modern societies presents an interesting paradox: although medicine assumed responsibility for managing the dying body, it remained fixated on prolonging life and hardly addressed death itself (Arney and Bergen 1984). For most of the twentieth century, little scholarly attention was dedicated to death, which many characterized as a cultural taboo (Faunce and Fulton 1958; Feifel 1959). Starting in the late 1950s, however, this taboo was challenged and developed into criticism of modern attitudes toward death (Steinfels 1974).

“For thousands of years, man has been the sovereign master of his death and the circumstances attending it. Today he no longer is” (Ariès 1974:9). In Western modernity, Ariès (1981:105) argued, death was “pushed out of the world of familiar things”; it was denied, hidden, and veiled. From a quintessential social occurrence—involving the dying person’s family, friends, and at times complete strangers—death transformed into a secret and secluded event, taking place in the medical sphere, far from the public gaze. Once an integral part of life, death became life’s antonym (Elias 1985).

Broadly characterized as “death denial,” this cultural pattern was thoroughly documented in U.S. health care. Reflecting on her groundbreaking study, Kübler-Ross (1969), one of the founding mothers of the U.S. hospice movement, noted how hostile clinicians were to the idea of studying death and dying. Similarly, Glaser and Strauss (1965) tackled death denial systematically by classifying four types of “awareness contexts” in hospitals. These contexts varied in patients’, families’, and clinicians’ awareness of death, as well as in their awareness of each other’s awareness. These accounts and others strikingly exposed the consequences of death denial: trapped in games of pretension, the terminally ill, their families, and the medical staff were unable to communicate, accept, or prepare for death.

The impact of this literature went beyond academic circles: its critique of modern Western attitudes toward death was a self-conscious effort to undermine these attitudes (Koff 1980:7). Hospices were connected to this effort: they aspired to challenge the denial of death, the consequent social isolation of the terminally ill, and the view of death as a medical failure. Hospices aimed to minimize the suffering of patients who lost hope of being cured and to save them from unnecessarily lengthy and aggressive treatment. As an alternative to conventional medicine, hospices offered specialized care for the dying: palliative, holistic care that simultaneously addressed patients’ physical, psychological, spiritual, and social needs (Hamilton and Reid 1980; Kübler-Ross 1969; Munley 1983).

Hospice ideology comprised two interrelated agendas: a medical and a sociocultural agenda. The medical hospice agenda concerned palliative care, focusing on symptom management and pain relief. Hospices challenged conventional medicine’s fixation on prolonging life and emphasized improving life’s quality rather than extending life’s length. Such treatment, it was argued, could only be given by treating death as a natural phase in life and acknowledging—rather than denying—the condition of dying patients. Herein lay the second, sociocultural hospice agenda: patients should be given the opportunity to accept their imminent death. Instead of fighting aggressively to seek a cure until the end, clinicians should help patients “let go,” support them through the process, and allow them to die comfortably and with dignity.

These two agendas of the hospice movement revolutionized the management of death and dying in U.S. health care. However, while hospices shared clear views about the virtues of accepting death and the importance of reforming the medical management of the dying body, they did not share an explicit vision about how hospices should manage themselves economically or about the general impact they should have on the U.S. health care economy.

This can partly be explained by the fact that during this period, health care spending did not constitute the problem it evolved into in the following decades; authors who wrote about health care were therefore less likely to address economic concerns. ⁴ Furthermore, medical ethics has historically divorced itself from economic questions and “had little to say about broad questions of healthcare financing” (Zussman 1992:10). It is therefore unsurprising that an ethically dense field such as hospice care disengaged itself from finance.

1970s: Scarcity within Hospices—Between Moral Necessity and Immorality

The first U.S. hospice was incorporated in 1971 in Connecticut. Until the early 1980s, hospices were small, grassroots, volunteer-based organizations with few sources of income. In a 1979 Comptroller General report, only two out of nineteen hospices that reported on their finances had income from Medicare, and only three were paid by private insurers and self-paying patients (Comptroller General 1979). The overwhelming majority of hospices relied on combinations of grants, donations, and volunteer work, with one hospice reporting annual operating expenses of $17,202 that were used to serve as many as 171 patients.

Many hospices during this period operated under extremely limited budgets, due to the precariousness of grant and donation-based financing (Stoddard 1978:41). At the same time, lacking a shared economic vision, hospice leaders disagreed about how to address this problem: they advocated for various strategies, ranging from a complete rejection of any form of monetized exchange to full support for corporatization and integration of hospices into the health care market economy.

Some hospice advocates adopted a hostile worlds approach, which translated into a view of scarcity as a moral necessity. Reluctant to mingle hospices’ ideological mission with money and markets, they sought to eliminate any monetized exchange from the hospice economy. The Hospice of Marin, for example,

decided at a very early point not to charge any fees for hospice care. Reasons for this included: (1) we hoped to be able to establish the practicality of hospice home care without having to focus on reimbursement; (2) we were concerned that if we developed a billing program along conventional lines, hospice care might not be seen as a unique addition to the medical care delivery system. (Lamers 1978:54–55)

In a similar vein, McNulty and Holderby (1983:166) stressed that “community based, all volunteer programs . . . provide, perhaps, the purest form of hospice care.” Many advocates claimed that the economics of hospices should be restricted to donations and grants; and, as reflected in the 1979 Comptroller General report on hospices, this was the policy many hospices embraced (Comptroller General 1979). From this point of view, scarcity was a necessary result of an inherent incommensurability between morally laden hospice work and monetary value, even when commensurating the two could provide hospices with additional resources.

Yet this approach was not the consensus. Many hospice advocates propagated a more pragmatic stance that would expand this scarce economy: they presented hospices as adaptable to what they called the “mainstream of medicine” (Koff 1980:172; McCabe 1982). Wentzel (1981) claimed hospices should use federal and private insurance funding, and Cohen (1979) and Dubois (1980) listed multiple financial resources, both public and private, on which hospice economics should rely. Some advocates even suggested that hospices should become for-profit organizations:

A financial management consultant, speaking recently at the Third National Hospice Conference . . . startled his audience with the comment that “now, the trouble with hospice people is that they think non-profit.” This observation is consistent with the comments of other experts, who know that there is no such thing as a free service. Any health care must have a source of support. (Koff 1980:144)

These advocates presented the hospice movement’s volunteer and donation-based gift economy as a fetter. Rather than a moral necessity, they presented scarcity within hospices as a negative and immoral burden that should be eliminated. The solution to this scarcity within hospices was found in hospices’ ability to address a greater problem of scarcity that growth in health care spending was starting to create.

1980s: TEFRA and the U.S. Hospice Market

In the late 1970s, hospices started presenting their services as cheaper than those of conventional medicine. Kübler-Ross was quoted as saying that “when terminal patients are treated in hospitals, costs can run about $300 per day, but at home, using the Brompton cocktail for pain control, medication materials costs ran about 80 cents per week!” (quoted in Cohen 1979:85). Wentzel (1981:106–107) stressed that “it is the strong contention of its proponents that hospice support can appreciably lower the cost of dying in America.” Several reports were invited and written to determine whether hospices were indeed cheaper than hospitals, bringing mixed results (Brooks and Smyth-Staruch 1983; Comptroller General 1979; Hospice Project Task Force 1980). Even without conclusive evidence, hospice advocates argued for their cost-effectiveness in all of the congressional hearings on the topic (e.g., United States Congress 1982, 1983).

During the early 1980s, when the Reagan administration sought to cut spending on health care (Rodwin 2011), hospices’ attempts to access state funds proved successful (Mor and Masterson-Allen 1987; Timmermans 1999). In 1982, Congress approved Medicare coverage for hospice with strong bipartisan support: 242 representatives and 68 senators co-sponsored the original bill, which was later added to the 1982 Tax Equity and Fiscal Responsibility Act (1982, henceforth TEFRA). To ensure cost saving, TEFRA capped hospice reimbursement at 40 percent of the average expenditure on cancer patients, who were the main target population of hospice. When the Department of Health and Human Services tried to decrease the cap, representatives claimed it would discourage patients from choosing hospice and thus increase total spending on health care. Spending more on hospice, they insisted, would mean spending less overall (United States Congress 1983).

TEFRA funneled substantial amounts of money into hospices; health care corporations, which identified an economic opportunity, started acquiring hospice agencies, prompting the corporatization of U.S. hospices. Since TEFRA passed, the number of Medicare hospice patients has grown at an annual rate of 10 to 20 percent (Christakis and Escarce 1996). Apart from a short intermission during the late 1990s, this was also true for the number of Medicare-certified hospices (see Figure 1). With a stabilizing regulatory framework and an increasing number of actors (Fligstein 2001), the hospice market was gradually established.

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Figure 1.

Number of Medicare Hospice Patients and Medicare-Certified Hospices since the 1982 Tax Equity and Fiscal Responsibility Act (TEFRA)

The development of the hospice care market shifted the primary source of scarcity within hospices. Scarcity no longer derived from a moral necessity—that is, an outcome of hospices’ reliance on donations and volunteers. In a corporatized economy, in which workers are salaried and hospice care is a commodity paid for with money, the degree of scarcity within organizations is determined by corporate administrative decisions and insurers’ reimbursement levels. Hospices also have a role in attempts to address the impending problem of scarcity in the U.S. health care system: increasing utilization of hospice care replaces more expensive hospital care.

The following sections rely on ethnographic data to provide an in-depth view of the moralization of the looming scarcity in the U.S. health care system and the moralization of budgetary scarcity within Nubis. The empirical discussion focuses on two key end-of-life decisions: (1) the decision to terminate curative care and transfer patients to hospice, and (2) the decision about the extent of care given to patients while in hospice.

Economies of Dying: The Economics of Hospice Admission

Since its enactment in 1982, TEFRA has remained the most central piece of U.S. hospice legislation. First, TEFRA’s reimbursement system structures hospices’ incentives and thus affects their economic agency. Second, TEFRA determines the criteria that define the scope of hospice care. It states that (1) Medicare pays only for patients with a prognosis of six months or less to live if their disease runs its normal course, and (2) hospice care includes only palliative care and is given in lieu of curative and life-sustaining treatments (Werth and Blevins 2002).

TEFRA’s reimbursement system was modeled after Medicare’s reimbursement system for nursing homes and home health services: Medicare pays hospices a lump-sum for every day they serve every patient, regardless of the services actually provided (Buntin and Huskamp 2002). When the daily expenditure on treatment exceeds this lump-sum, hospices absorb the loss; when it is lower, hospices extract a surplus. ⁵

Operating under this funding mechanism, there are two main ways Nubis’s management can increase its surplus. First, it can increase the number of patients it serves and raise the surplus through an economies of scale strategy. In other words, it can use the same staff and resources to provide care to a larger number of patients:

Ann [the volunteer coordinator] tells me . . . that things have been hectic recently. [She says] it’s because . . . we’re admitting many new patients. I ask her why. . . . She says that we’ve been in the red for a long time, and now we are trying to get out of there. I ask her what counts as being in the red; she answers that it’s when there aren’t enough patients in the hospice. . . . “We can’t stay there for long periods.”

[Tony, the hospice aides’ scheduler] looks very tired . . . says she’s been working very hard lately. She shows me the hospice census, which now includes 138 patients. This is a huge difference from the number Ann mentioned a couple of weeks ago, which was somewhere around the 80s. Tony says work has been very intense lately “coz my girls are fully booked.” (field notes, October 24, 2008)

Another strategy Nubis’s management uses to increase its revenue is what I call economies of dying, namely, extending patients’ length of stay in hospice. Most of the expenses for hospice patients are incurred in the first and last days of service. The first days following admission to hospice usually involve much work: equipment and medications are transferred to the newly admitted patient’s house; nurses, social workers, and chaplains visit the patient for evaluation; and a comprehensive care plan is formulated for the patient.

In most cases, work during the last days before a patient’s death is also intensive and expensive. Family crises and medical complications require more frequent visits. Consequently, Nubis does not profit from the first and last days of service: surplus is produced only in the middle period between them (see Figure 2).

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Figure 2.

How Economies of Dying Strategies Are Practiced

Nubis’s management therefore tries to extend the average period its patients are on service. This is not easy:

Patients usually arrive here in the last stages of their illness, because their families don’t want to accept the fact that they are going to die. It is hard psychologically and this is what makes people’s stay in hospice too short and what causes us problems. (office worker, field notes, September 12, 2008)

Hospices are legally forbidden to be selective in their admission processes, and Nubis does not reject patients on the grounds that their life expectancy is too short to be profitable; instead, Nubis’s management tries to admit all patients earlier. This is done in several ways. First, investment in education and marketing:

It’s a matter of education, explaining to people that hospice is not such a bad thing. We’re trying to advertise ourselves; . . . we employ a marketing woman who goes to talk to doctors in their clinics and explains to them the services that we give, so that they are not afraid of sending patients to the hospice. (office worker, field notes, September 12, 2008)

Second, Nubis expedites the admission process by placing hospice nurses—hospice liaisons—in local hospitals. Hospice liaisons spend most of their time in the hospital, holding informational meetings with patients and families who are expected to be referred to hospice or who already have a referral. Liaisons make the admission process faster (which allows Nubis to bill for additional days of service) and give Nubis a competitive advantage over other hospices.

Admission, Competition, and Cost Saving

When hospital patients are referred to hospice, hospices begin to compete over the right to admit them. Hospice regulations require that patients who accept hospice referral are given the opportunity to choose a provider. In reality, however, most people do not know any of the hospice providers in their area. Still overwhelmed by the grim medical prognosis, they and their surrogate decision makers are often too shocked and confused to make their own choice (Kaufman 2005); many ask the hospital nurse to pick a provider for them, or simply choose the first name on the list.

The presence of hospice liaisons in hospitals is therefore extremely significant. A good liaison can develop personal relationships with hospital nurses, patients, and families. Unlike hospital nurses, who are often overworked and tired, hospice liaisons have much time. Even on their most intensive days, they usually do not hold more than five informational meetings, and there are days when they do not have any meetings at all. In some cases, the hospice liaison is the most available person on the hospital floor. The liaison has time to chat with patients and families, explain about hospice, and walk them through the difficult process of accepting a terminal diagnosis and forgoing curative care. In addition, liaisons often have the time to help hospital case-managers handle the paperwork of discharging patients and transferring them to hospice:

It’s competition. . . . Hospital [case-managers] doing the work to get people out are so overwhelmed and busy that if you say “oh, just call us, we’ll do it”—that’s who’s gonna get the referrals. (hospice liaison, interview)

Patients are more likely to choose Nubis after spending a few hours with an attentive and trustworthy liaison. Hospital staff are more likely to refer indifferent patients to Nubis when they know that Nubis’s liaison will help with the paperwork, or when they feel they owe the liaison a favor after having received help in the past:

The [hospital] case-manager is supposed to say, here’s a list of different hospices, . . . tell me which one you want. . . . [But] it all comes down to relationships, right? They know me, or they know one of the other people, they like us, they know that we do good work, whatever, we get along well. . . . So I think sometimes they don’t go out of their way to say “here’s a big long list,” they say, “how about if I send someone from Nubis over to see you?” (hospice liaison, interview)

Besides the networks that develop among liaisons, hospital staff, patients, and families, there are also institutional relationships between Nubis and some hospitals. Aiming to increase the number of patients it serves, Nubis’s management cooperates with local hospitals that are owned by the same corporation that owns Nubis. Although these hospitals must allow patients to choose their hospice care provider, they can put Nubis at the top of the providers’ list given to families and patients, print “Nubis Hospice” on the list in bold letters, and refer patients who have no preference to Nubis. When local hospitals owned by this corporation started using these methods, the number of patients they referred to Nubis increased.

This cooperation is related to a perceived common economic interest that hospices and hospitals have. The per diem system that Medicare and other insurers use to pay hospices is different from the Diagnosis-Related Groups (DRGs) system that Medicare has used in hospitals since the early 1980s. Under DRGs, hospitals are paid per diagnosis: insurers provide them with the amount of money designated for the patient’s diagnosis, calculated based on the average length of hospitalization of patients with a similar diagnosis. If a hospital spends more than this amount, it has to absorb the loss. DRGs set a state of scarcity within hospitals, and many hospital administrations interpret their financial interest as discharging patients early to hospice to reduce their costs (Pantilat et al. 2007). ⁶ Hospices, in contrast, have incentive to admit patients early, because under TEFRA, they are paid per diem: earlier admission of patients provides hospices with more resources. As one of Nubis’s managers explained:

Hospitals lose money on every Medicare patient. Hospice[s] . . . make money on every Medicare patient. That’s a match [made] in heaven—isn’t it? We take the patients, we take care of them, we survive, and the hospitals survive, and we provide good care without losing money! It’s like nirvana!” (manager, interview)

This economic cooperation is not the driving logic of hospice admissions. All the hospice workers I talked to mentioned that some people “aren’t ready” for hospice and emphasized that they would never try to admit them to hospice prematurely. Still, the institutional relationships between Nubis and hospitals led to more hospice admissions on the aggregate level. The effort to limit health care spending, which was the driving logic of TEFRA, indeed led to increased hospice utilization. ⁷

Scarcity and the Hospice Ethic

This economy of end-of-life care involves the financial interests of multiple market actors. Nubis’s workers are aware of these interests and play an active role in pursuing them: in practice, they promote earlier diagnoses of people as “dying” than is done in conventional medical care. ⁸ Yet workers do not consider this an ethical problem, because economization and the hospice ethic prescribe similar professional practices: admitting hospice patients early. Because the financial imperative and the hospice ethic correlate, Nubis’s workers, although not primarily motivated by pecuniary interests, address financial interests as they pursue ethical ends.

Nubis’s workers are acquainted with the hospice movement’s critique of conventional medicine, and they identify with it. In many conversations I had with workers, they presented themselves as facing the challenges and fighting the battles that hospice pioneers fought in the 1970s. Several clinicians who had worked in hospitals and clinics told me about their unease with conventional medical practices, which eventually made them move to hospice care:

I worked in this one [hospital] unit, we had people there that actually ended up being on ventilators . . . for over a year, . . . and a lot of them were never even spoken to about hospice or end-of-life issues. So I started to develop a kind of an attitude and feelings about why are we doing a pacemaker in a 102-year-old person? You know, these kinds of issues started to crop up at work nightly. . . . It didn’t feel good too; I wasn’t really sure what kind of care I was providing at that point. (nurse, interview)

During a nurse training session I attended, a senior nurse described Nubis as fighting overly ambitious hospital doctors who refuse to acknowledge that some of their patients are terminal and thus continue unnecessary and painful treatments that cause much suffering:

“We realized that some patients manage to get only three or four days of hospice care before they die,” she says, “which is way too little, because usually you can know that the chances that the treatment will help them are very, very low.” The nurses nod in agreement.

“Sometimes oncologists are so ambitious,” she continues, “that they give up only a few days before the patient dies.” She says that they . . . have to make families and patients aware that there is an alternative option—hospice care—which provides palliative care and helps people die at home with dignity and relatively less pain. (field notes, September 29, 2008)

Hospice workers are therefore morally motivated to transfer patients from hospitals to hospice care earlier than is typically done. Earlier admission to hospice, they believe, can save patients from painful, aggressive treatment that has little chance to succeed. At the same time, early hospice admission is also lucrative for hospices, hospitals, and Medicare:

Hospice services are way less costly for Medicare than hospitals, so [Medicare] doesn’t want hospitals used, just from a financial perspective. And most patients feel like they’re gonna get better treatment at home . . . so we can provide better treatment in a place a patient would rather be for cheaper. For me, maybe this would even shine more light on [the] hospice benefit. You know? Not just the patient, but society as a whole. (social worker, interview)

Earlier transfer to hospice can also provide patients with more time to prepare for death and increases the chances the dying experience will be emotionally and existentially meaningful:

Getting [patients] on [hospice] as early as possible has a financial benefit, but it also has benefit for the patient and family. The more time they’re on hospice, the better they do; the shorter time they’re on can be much harder. If it’s been all of a sudden, and it’s just a new diagnosis and three days later they’re dead. . . . People never have time to . . . it’s more like the kind of sudden death experience, which is not the model for hospice. (hospice liaison, interview)

The hospice ethic therefore converges with Nubis’s financial interests, hospitals’ financial interests, and the overall effort to reduce spending on end-of-life care. Policymakers aim to control spending and create incentives for hospitals to transfer patients to hospice early. Hospitals operating under this incentive system generally aim to discharge patients early. Hospices such as Nubis try to increase their revenue by admitting as many patients as possible for the longest periods possible. In pursuit of its financial interests, Nubis’s management acts strategically, cooperates with hospitals whose economic interest is to discharge patients, and sends liaisons to network in hospitals and gain an advantage over competing hospices. The hospice ethic prescribes similar practices: patients’ well-being is achieved by saving them from invasive care in hospitals (Kapo et al. 2005; Rossman 1977). This is one underpinning of the positive moralization of scarcity by hospices.

Care and Scarcity inside the Hospice

Perhaps the most contentious effect of scarcity on caregiving begins after admission to hospice. Nubis’s administration strives to limit its average spending on patients to the amount of money covered by insurance policies. For example, if Medicare pays Nubis $210 per day for each patient, Nubis aims to keep its average expenditure per patient below the $210 level.

In principle, hospice care is cheaper than conventional care, because it replaces invasive life-extending interventions with less costly comfort care. In practice, however, interpretation of what is considered comfort care is rather flexible and may include highly expensive interventions. Blood transfusions for leukemia, for example, can be interpreted as both curative (they slow the progress of the disease) and palliative (they make patients feel better). Radiotherapy, which is usually considered curative, can also be defined as palliative when used for certain kinds of bone cancer. Even chemotherapy, seemingly a quintessential curative treatment, can be defined as palliative, as it can reduce the pain a tumor causes by shrinking its size.

Whether such treatments benefit hospice patients and whether they are consistent with hospice care—that is, they provide comfort as opposed to life-extending care—is widely discussed (Albrecht et al. 2013; Prommer 2004; Reinbolt et al. 2005). In addition, this blurred boundary between curative and palliative treatments poses serious financial challenges to hospices. Such “boundary treatments” are costly and often involve travel to a clinic and, in some cases, hospitalization. Legally, Nubis is allowed to provide patients with many of these services; economically, however, its administration is reluctant to pay for them. Conflicts around this issue occur between patients’ families and Nubis’s workers regularly:

I had a patient, a really lovely lady. . . . She had leukemia. And, you know, . . . the transfusions weren’t really helping, . . . so she came on hospice. Well, we had a little bit of ups and downs, and then at one point she got very [tired] and the [husband] was very angry, saying “if you just give her the transfusion she’ll feel better.” So we did a lot of debate and I even called [the manager, who] said, well, she hasn’t had one for a while and if she wants one hospice will pay—we’ll say it’s a comfort measure at this point. But we can’t do this every week! So we did [one] transfusion. She felt a lot better. A lot better. (nurse, interview)

Nubis’s general policy is not to approve such treatments, especially when they are needed for long periods. Nubis has an official formulary, a common way to control spending (Ubel 2000), that determines which medications are included in its services. This policy applies to all medical care provided at Nubis, including treatment of simple infections:

Generally speaking, we don’t treat patients with antibiotics. And if you keep getting pneumonia, because you’re swallowing the wrong way, it could be treated with antibiotics. If you keep getting UTIs, it could be treated by antibiotics. But if this keeps happening over and over, and the patient’s getting weaker and weaker, and the quality of his life is getting worse and worse, . . . hospice would say, “no, we’re not gonna pay for it.” (social worker, interview)

During admission, Nubis’s nurses check the medications admitted patients take regularly and see if they can take patients off the expensive ones that are not included in Nubis’s formulary. When an admitting nurse fails to remove an expensive non-formulary medication from a patient’s care plan, one of the hospice physicians or nurse-supervisors usually asks why this medication is still being used. In most cases, the medication is removed from the patient’s care plan and replaced with a cheaper medication from the formulary.

Many patients admitted to hospice have had long, challenging, and painful struggles with their illness, and some patients get used to certain medications and oppose any change in their prescriptions:

There’s . . . a drug for nausea—Zofran. Zofran, if you’ve been on chemo and nothing else works—Zofran works. But, according to [our medical director], once you come off chemo, Zofran doesn’t work as well. But, you try and tell that to a patient who has only had success with Zofran and has lived with nausea and vomiting! They don’t want anything else! They only want the Zofran, and it’s very expensive. (nurse, interview)

Nubis’s management thus directs workers to limit the care they provide. Meeting patients on a daily basis, workers have an unmediated experience of the effect this has on patients’ lives. What are the moral underpinnings of these practices? In the following sections, I point to two underpinnings: first, Nubis’s solvency and ability to provide hospice care depend on limiting care and spending; second, I show that budgetary constraints acquire a moral meaning that resonates with hospice ideology.

Solvency and Boundary Treatments

One important characteristic of the U.S. health care system is that health care providers function as individual business units that must keep their budgets balanced to stay afloat. Organizations that lose money are forced to cut back on their services and, at times, shut down (cf. Kornai 1980).

From the point of view of a care worker who sees her work as a moral calling, the economic success of the organization where she works is essential for the care she gives. While budgetary scarcity within an organization is viewed as an objective constraint, it is not morally neutral. Nubis’s management, in particular, presents scarcity as a moralized constraint: the organization needs to meet the constraints of scarcity to continue serving the dying. This is how a nurse training instructor explained the need to reduce Nubis’s expenses:

Look, we all want to keep our jobs, so we have to think about expenses [nurses nod]. There’s a simple rule: Morphine—cheap! [laughter] Methadone—even cheaper! Oxycodone—not so good. Always try to go to Morphine [or Methadone]. (field notes, September 29, 2008)

In a staff meeting that dealt with cutting Nubis’s expenses, several workers said that some of the manager’s suggestions were inapplicable. The manager replied assertively:

We mustn’t end this meeting only with things we can’t do. We have to think about things we can do, otherwise we’ll end up like [another unit]. They told [the corporate management] “we can’t possibly function here,” and guess what? Soon there will be no [name of unit] anymore. So if you want that, then tell me all you can’t do and we’ll have that. But if you want to stay here, if you want the hospice to survive, then tell me what you can do. (field notes, July 22, 2009)

In a later interview with this manager, she told me,

You have to have money to stay in business, and I want to provide care to families. I think our service is one of the best services there is in the universe. We provide good care! Excellent care! . . . When I had that family just being so distressed, so upset . . . [I walked] in and that calmed them, because they knew they could do it. Just the little bit I was doing! And all the times I’ve gone into people’s homes and they [said], “oh, my God, I feel so much better, I feel like a burden has been relieved, lifted from my shoulders—I’ve heard that a million times.”

Workers sometimes become very emotional when they talk about Nubis’s financial performance. In a luncheon dedicated to the hospice’s volunteers, a tearful Nubis volunteer coordinator spoke about the financial difficulties Nubis was facing. The altruistic realm of volunteering merged with details of Nubis’s economics; both were presented as meaningful parts of hospice work:

Ann gets back to the microphone and thanks us again, with tears in her eyes, for the last year. . . . This year wasn’t easy, she says, for quite long periods we were in the red. Our census dropped below 100 patients, and at some moments we had only 80 patients. . . . For a pretty long period we were losing money, and we should remember that even though we’re a non-profit, we are still a business. There were moments this year that we thought we would not be able to keep the hospice running and that the place would have to shut down. But now we managed to build back our patient population, cross the 100 patients, and the situation is a lot better. (field notes, April 25, 2009)

Workers speak about Nubis’s financial situation emotionally because they see it as a condition for providing care. The identification between limiting spending and the ability to fulfill the hospice ideology helps neutralize the possible tension between the two. In a health care system where hospices function as individual businesses, the alternative to conforming to the limits of scarcity is shutting down and not providing care. Hospices’ financial interests are therefore bound up with workers’ moral motivations.

Limiting Spending in the Pursuit of Hospice Principles

The second underpinning in the moralization of scarcity at Nubis is that workers rely on scarcity to pursue hospice principles. In particular, a repeating theme in the data is workers who describe limiting spending as a way to encourage patients to accept death, “let go,” and recognize the limits of what can be done to save a human life (cf. Callahan 1987).

When I asked a Nubis physician if he felt Nubis’s financial considerations contradict the hospice ideology, he replied, “I would find it contradictory to pay for a lot more life-sustaining treatment inside hospice.” Similarly, in staff meetings, when patients or families were reported to be interested in boundary treatments such as palliative chemotherapy, they were often seen as denying death.

Boundary treatments were not rejected just on economic grounds; rejecting such treatments was also seen as a medical and ethical act. Economically, Nubis sought to reject expensive treatments. Medically and ethically, Nubis’s workers did not want to pay for treatments they felt signified death denial. Limiting spending was itself a way to acknowledge the limits of medicine and accept that death was approaching. By limiting spending, workers tried to help patients prepare for their death psychologically, emotionally, and spiritually:

It may sound a little paradoxical, but part of the spiritual aspect of hospice is that you talk about costs. People think “Money? Costs? How can that be spiritual?” But it is! Because, it’s forcing people to come down to earth and realistically confront what we can and can’t afford to do. And that automatically puts them into the spiritual realm, because it forces us to be real and to be present, and not to be off in some state of denial when we’re pretending . . . and we’re really not confronting what is here. (physician, interview)

More than just a method of budgetary austerity, Nubis’s workers use financial limits on care as a means to help patients and families face death. Here, capping spending is a form of psycho-social treatment, aimed at achieving some of the main goals of hospice care: establishing awareness and acceptance of death, helping patients and families prepare for death, and making death a meaningful experience. From this standpoint, providing patients with expensive medical care in hospice is contradictory. The hospice goal is to give patients things beyond expensive interventions, and focusing on standard medical procedures interferes with this goal:

What hospice offers, is putting a time period around some things. . . . When you’re in hospice . . . that is the time for you to take care of [unfinished] business, . . . anything special you want to do, anybody you want to see, and it allows people to realize and take advantage of that. . . . If you’re not in that mode, if you’re in the mode of “let’s try some more therapy” or “let’s try some more chemo,” or let’s try this or let’s try this—you’re never in that period of looking at your life and reflecting on who is important to you. (social worker, interview)

Providing more medical care is ultimately seen as counter-productive (cf. Rossman 1977:205–208). A nurse who shared with me the personal story of her husband’s death illustrated this strikingly:

You know, my husband died several years ago. His last day was horrible. He just kept grabbing the side-rails and sitting up—“help, help!”—and I kept giving him everything, doing this, doing that, because I was so not present. Because I was not really present, I was . . . going “Oh, my God, what does he need? He needs this, he needs that?”—nothing. Nothing put him down. I gave him Morphine and Oxycodone. . . . I gave him a ton of stuff, . . . because he couldn’t let go. Finally, at two o’clock in the morning I realized what I was doing. I said “Oh my God, I haven’t released him.” And so I released him. I said, “It’s okay, I’m gonna be alright, you can go.” I said a bunch of stuff, but that was what I said. I said “I need [you] to just lay down, put your head down on the pillow and go to sleep, just let it happen. I’m gonna go right over here, lie in my bed. I’m right here if you need me, but let’s just both go to sleep.” He left. It was amazing. (nurse, interview)

In the hospice moral economy, providing much medical treatment, and expensive treatment in particular, is regarded as death denial. It is exactly by abandoning expensive medical procedures in the care for the dying that the most important elements in hospice care are realized: empathy, spirituality, compassion, and personal attachment. Scarcity is hence not an external financial limit imposed on morally driven care work—it is itself used in moral practices. Limiting spending is an existential statement that life is finite, people are mortal, and there is a limit to what can be done to extend life. By limiting spending, clinicians acknowledge the limits of human agency and invite patients to come to terms with their imminent death, to receive emotional and spiritual support, and to reach higher levels of personal connection. When spending less means caring, economic scarcity is valorized.