When a young psychiatrist by the name of Elizabeth Kübler-Ross was collecting data for her project on dying in America in the 1960s, she went to floor after floor of a hospital asking the staff whether she could talk to dying patients. “There is no one dying on our floor,” was the answer she received on every floor, until she covered the whole 600-bed hospital. She then realized what the problem was: despite the fact that about 75% of Americans died in hospitals, hospital staff were very uncomfortable with death and dying, and were effectively refusing her the opportunity to talk to the dying patients about their experience.^{Footnote 1} Kübler-Ross’s book On Death and Dying, published in 1969^{Footnote 2}, became a catalyst for a subsequent change in public and professional attitudes to death, dying and grief.

Over the past 50 years, we have come a long way in the treatment and options available to critically ill patients in the United States. Since the opening of the first hospice in Connecticut in 1974, there are now close to 6,000 hospice programs nation-wide, serving more than 1.5 million patients, the vast majority of them being Medicare recipients. The Medicare Hospice benefit was initiated by Congress in 1982 and made permanent in 1986, with further provisions hammered down in 1993. It pays on a per diem basis irrespective of the kind of care provided. According to the National Hospice and Palliative Care Organization, about half of the Medicare recipients who died in 2016 received at least one day of hospice care. While these averages hide many regional and racial differences in hospice use, they are nevertheless a powerful illustration of the quiet revolution that took place since the original publication of Elizabeth Kübler-Ross’s book.

Hospice care, which takes place outside of hospitals,^{Footnote 3} was analysed by Roi Livne in an earlier publication^{Footnote 4}. In that work, he frames the hospice as an economy of dying rooted in the moralization of economic scarcity. Rather than perceiving scarcity negatively or in neutral terms (as a given), hospice philosophy views scarcity as morally positive and desirable, an antidote to what is perceived as an immoral abundance of (aggressive) medical treatments at the end of life. It is a moral imperative to save patients from unnecessary treatments. But hospices manage to seamlessly align morality with money: limiting care assures a “good death,” while also helping to reduce healthcare costs. And both help sustain the hospice economy, a largely for-profit industry in the United States.

Learning about the hospice economy, made Livne wonder how patients end up choosing hospices over hospitals in the first place (in other words, how patients become to be viewed as “dying”). To answer this question, he went to hospitals: to patients’ bedsides, to conference rooms where conversations about end-of-life care between patients’ families and hospital teams took place, to the archives of hospital ethics committee meetings, detailing complex cases and disagreements about continuing or withdrawing care at the end of life, and to palliative care clinicians themselves—members of the recently minted medical specialty that is becoming a staple in American hospitals. By the time Livne undertook this project, members of hospital staff were much more willing to talk about end-of-life care and much happier to welcome a researcher among their ranks than 50 years ago, when Kübler-Ross was carrying out hers.

Values at the End of Life is an ethnography of palliative care in three Californian hospitals: a public hospital, an academic center and a private non-profit hospital. Palliative care is an expansion of the hospice philosophy of moralized scarcity to the heart of medicine and to hospital care settings, where palliative care doctors collaborate with oncologists, cardiologists, and other hospital specialists caring for critically ill patients. More than 66% of American hospitals with 50 or more beds now have formal palliative treatment programs, ranging from 90% of larger hospitals (300 or more beds) to 56% of smaller ones^{Footnote 5}.

The book relies on a combination of historical, ethnographic and interview data. Livne conducted 80 interviews with members of staff from six area hospitals and shadowed medical teams of three of them for 80 workdays resulting in hundreds of hours of observations. Despite the three different hospital settings, Livne found great similarities in the ways that palliative care was practiced. By the author’s own account, this is a multisite ethnography rather than a comparative one. Unlike many other ethnographies of dying in American hospitals, this one is not confined to one particular service (for instance, ICU or ER). Rather, the author follows palliative care professionals to different hospital floors, perhaps emulating the way that palliative care professionals have been integrated throughout entire hospitals.

The first part of the book—chapters 1, 2 and 3—focuses on the confluence of professional, institutional and policy dimensions to illustrate the rise of the new economy of dying that emerged in response to two pressures—moral and economic. The death-and-dying movement of the late 1960s-1970s initiated a moral crusade to break the code of silence around death, reduce suffering, and help dying patients achieve peaceful and dignified dying on their own terms. They helped first seed and then spread professional doubts about the value of treating critically ill patients intensively. But the center of gravity was soon moving from “death and dying” associated with the hospice to a more encompassing “end-of-life” associated with palliative care taking place in the hospital. This reflected the shift from treating “patients who were unquestionably dying… [to asking] whether patients were dying, how far away they were from death, whether a clear line between serious and terminal illness could be drawn, and what type of care would be appropriate given their prognosis” [46]. This shift was financially supported by foundations like the Open Society Institute, and was comprehensive in scale: it included educational and training initiatives involving physicians, nurses and social workers, as well as broad educational initiatives, including radio and TV programming, books and documentaries, aimed at changing the culture of dying in America in order to increase awareness and demand for palliative care.

How moral values at the end of life started to be framed through the lens of economic values—the question that is at the heart of markets and morality literature in economic sociology, to which the book makes its main contribution—is the focus of Chapter 2. In particular, the chapter carefully traces how doing less invasive care at the end of life in order to do better was gradually transformed into spending less on these procedures in order to spend better, and what roles various actors—hospital and insurance executives, health economists, policy-makers, and hospice and palliative care clinicians—played in this transformation. This is the chapter I discuss in greater detail below.

In Chapter 3, Livne analyzes archives of hospital ethics committee and shares an intriguing observation. The usual drumbeat of the death and dying movement was that doctors, constrained by their training and the “do no harm” pledge, were overtreating patients at the end of life, most of whom would have liked to die at home surrounded by friends and family, and not in an ICU hooked up to a machine. But a transition has taken place whereby doctors have switched roles with patients. While doctors have internalized the economizing imperative that “less is more” at the end of life, they now have to convince patients and their families that an economized dying is the way to go. Not all patients need convincing: more educated and higher income whites are more likely to already be on board with this. That is not surprising because one can only be eager to economize at the end of life when one’s access to healthcare has otherwise not been constrained or compromised. In the United States, both income and race are strongly correlated with having regular access to health insurance, and that correlation holds even after the passage of the Affordable Care Act.

The second half of the book is focused on day-to-day decision-making regarding end-of-life. Chapter 4 deals with how palliative care clinicians achieve what Livne calls “subjectification”—a process of constructing who patients are in a way that would make their selves compatible with the economization of dying (“he is not the kind of a person who would like his autonomy to be stripped away like this”). Finally, chapter 5, aptly titled “goat taming,” is about how palliative care clinicians artfully manage to “tame” the hopes and expectations of patients or their families that threaten to challenge or undermine the economization project.

The book is written in a clear engaging prose, demonstrating both the author’s admirable erudition and his skill as an ethnographer. While it does not take a critical stand on hospice and palliative care, or on how it is delivered, it sheds light on the institutional history of the rise of hospice and palliative care in the US, and provides an honest and richly documented account of the inner workings of hospital care for patients at the end of life.

The author is absolutely right to point out that, in the context of the US healthcare system with its weak centralized mechanisms of governance, standardization of care nation-wide and across different types of healthcare organizations is quite low. Therefore we can only understand economization and how it impacts the critically ill and the dying if we study it empirically at the bedside. As Livne perceptively notes, “[l]imits at the end of life are not imposed extrinsically, as prohibitions that bind people, but intrinsically, through pervading people’s professional, financial, and moral outlooks” [13-14].

But if centralized governance is weak, and standardization of care is low, we should also pay attention to the variations at the level of hospitals. Chapter 2 analyzes historical documents and policies, and argues that, starting in the 1970s and for the next several decades, palliative care advocates and allies persuasively claimed that end-of-life costs were too high. (In fact, it turns out that as a percentage of overall healthcare costs, end-of-life care costs in the US were not higher than in the UK or the Netherlands, and they did not disproportionally increase overtime.) Short of calling it a moral panic, Livne argues that the emphasis on cost containment made palliative care attractive not only on moral but also monetary grounds, similar to his earlier argument about hospices. In a health care system like that of the US—decentralized, private and partially for-profit––the incentives of different actors may be at odds with each other. Medicare clearly benefits from palliative care replacing intensive hospital treatments, but if doctors are paid on a fee-for-service basis they may benefit from over supplying care to critically ill patients. It is not immediately clear why hospitals should necessarily see economization and palliative care as financially beneficial, as Livne suggests citing the pressure of DRG (diagnosis-related group) reimbursements. The implementation of the DRGs in the early 1980s was intended to control Medicare and Medicaid hospital spending by replacing the usual fee-for-service payments with prospective reimbursements. However, it was only partially successful as hospitals responded by engaging in widespread DRG creep—maximizing reimbursements by searching for the most remunerative (but still plausible) diagnoses, or in shifting to outpatient care, which DRGs did not cover. Dartmouth Atlas Project founds significant variations in Medicare per patient costs, including in the last 6 months of life, across states, hospitals and even neighboring towns^{Footnote 6}. In some hospitals, Medicare patients get much more care—more admissions, more procedures, more days spent in the ICU—than patients with a comparable diagnosis do elsewhere. Is it possible that different types of hospitals that are subject to different incentives adopt palliative for different reasons and at different points in time, and that economization is more important in some of them than in others? For instance, public hospitals with limited funds and underinsured patients as well as integrated healthcare systems like Kaiser Permanente, which serves as both an insurer and a provider, have the strongest financial reasons to economize. Academic centers as recognized leaders in their professional field may adopt palliative care mainly for prestige because it is seen as a frontier in medical education and patient care, whether or not palliative care actually helps reduce costs. Private hospitals, particularly the for-profit ones, may be holding out, only adopting palliative care when directly pressured to do so by insurers or the government. Available data confirms that public hospitals are indeed most likely to house palliative care programs, followed by private not-profit hospitals, while private for-profit hospitals are least likely to do so.^{Footnote 7} Given that different states have different mixes of hospitals (for instance, for-profits are concentrated in Texas and Florida, and a few states, including California, have well-known integrated healthcare systems), one may ask another question: how representative is California of the rest of the country?

These questions and concerns notwithstanding, this is a book that should be widely read not only by academic sociologists, but by policymakers, patient advocates, health professionals, and even members of the general public. No one can predict what their last weeks or days are going to be like, and precisely because there are no standard guidelines when it comes to care at the end of life in this country, learning about how these decisions are made is of great practical value to us all.