"The job of ethnography, or one of them anyway, is indeed to provide, like the arts and history, narratives and scenarios to refocus our attention; not, however, ones that render us acceptable to ourselves by representing others as gathered into worlds we don't want and can't arrive at, but ones which make us visible to ourselves by representing us and everyone else as cast into the midst of a world full of irremovable strangeness we can't keep clear of."
This is a book about time and death. It is about the bureaucracy, rhetoric, machines, and procedures that define American hospitals and structure time and death within their walls, creating a new reality -- death brought into life. It is also about the culture that predominates in the hospital and its deep, internal ambivalence about death. That ambivalence arose with the coming together of three elements: the work and goals of medicine, American individualism, and the market-oriented health care delivery system. It confronts patients, families, and hospital staff with the need to make seemingly impossible choices. Together, these elements have contributed to a vociferous nationwide conversation about "the problem of death," a problem that is manifested most visibly and dramatically by patients who have entered what I call the gray zone at the threshold between life and death. This book maps the journeys such patients take into and through that zone as well as the culture that surrounds it. Throughout my two years of on-site research, I sought to learn how doctors, nurses, patients, and families experience the hospital and the deaths that occur there. I wanted to understand why hospital death is considered by so many to be "a problem" and to explore the nature of that problem's recalcitrance. This book traces -- through the experiences of the doctors and nurses who work in hospitals, the very sick patients who enter them, and the family members who must decide what to do -- the ways in which hospitals shape the deaths that happen within their walls and the social sources upon which those configurations are founded.
Beginning in the 1980s, "the problem of death" emerged as a new topic, part of a broad public discourse in the United States. In front-page news articles, op-ed pages, and popular magazines, on radio and television, people were talking about it. Ordinary individuals were disturbed about the ways their loved ones died in hospitals -- connected to tubes and machines, following endless procedures, disoriented and in pain. In general, they died after too much technological intervention and with too little personal say. Doctors made public their dissatisfaction with losing their authority to freely determine the care of their dying patients. Health economists, policymakers, and hospital administrators bemoaned the fact that dying cost too much and went on for too long. Throughout the 1980s and into the 1990s it became increasingly clear to critics and analysts of the health care system that large numbers of people had become critical of the management of dying, the procedures for dying, and the institutional circumstances in which dying was taking place.
American understanding of the relationship between medical care and the dying transition has come to hinge largely on the structure of health care delivery, and that structure has consequences for health professionals, patients, and their families. The ways we think and talk about the "dying process" and the dying person and the ways we prepare for death, stave it off, and respond to medical treatments for those near death are all shaped by social institutions and bureaucratic practices. And that led me to ponder the circumstances in which the American health care system allows us to classify people as dying and the ways in which hospital death has come to be understood as a problem. Today, more than twenty years after the public discussion began about the difficulty of dying in American hospitals, the conversation remains heated and the "problem" affects more patients, families, and health professionals than ever before.
Death today is medically and politically malleable and open to endless negotiation. This means that death can be timed, and timing has become the crux of the matter. While the primary task of medicine is to deny death, everyone also knows that, ultimately, death cannot be denied. But medicine can manipulate when death occurs. Cardiopulmonary resuscitation (CPR), mechanical ventilators, feeding tubes, and powerful medications, for example, are all tools that, if applied, can slow death's arrival and, if withheld or withdrawn, can speed it up. Because these tools are ubiquitous in the hospital and natural to it, the compelling, inescapable questions when death seems near become whether to start or continue their use, when to stop their use, and on what grounds these steps should be taken. Attention is focused on the timing of events and procedures, and this has determined the possibilities available for approaching life that is near its end and, ultimately, death.
Yet medical tools and procedures are not the only contributors to the way hospital deaths happen, and they are not the only contributors to the widely felt disquiet. In American society, with its strong emphasis on the ideal of individual rights, the decision-making power of a person facing death is deemed necessary and central. The importance of listening to the patient's point of view, the need for others to intuit that view when the patient's voice is silenced by disease, and judgments about how long the life of a very sick patient should be maintained by medical means all become essential factors in the timing of his or her death. A specific rhetoric -- of "suffering," "dignity," and "quality of life" -- shapes those judgments and is deployed often in hospital discussions about what to do for and about the critically ill individual. That rhetoric emerges as a strong determinant of when death occurs.
People today want things from death, and their desires are both contradictory and unprecedented. Many want dying to be an experience that can be characterized as "good," yet persons near death and those who care for them often perceive it as difficult or painful, harrowing or humiliating. People want death to be made comfortable by the tools of medicine, which they expect can eliminate both the disturbing visible signs of the body's disintegration and the patient's experience of suffering. Yet they also hold vague ideas that death can somehow be "natural" -- and by that they usually mean peaceful and easy, like the sleep of a child -- and without the overuse of drugs or machines. People want the medical profession to offer hope and compassionate intervention, but they are distraught when death is preceded by "too much" invasive medical technology. Many want to control the way death happens for themselves and their loved ones by planning ahead for it, yet few are actually prepared for the moments when decisions must be made or for the kinds of questions that will emerge when death is near.
Hospital death is framed as a problem in the United States because, while many claim to want that elusive "good" death for themselves and their loved ones, they also want -- equally or more strongly -- that their loved ones not die. These contradictory emotions emerge from a particular view of medical progress -- that the tools of contemporary medicine can effect more and more cures, stop (for a while at least) the process of growing old or repair the failing bodily systems that accompany very late life, and deny death indefinitely. Thus a great many people experience -- as patient, family member, friend, or clinician -- the seemingly insoluble tension between, on the one hand, the desire to extend someone's life and the expectation that it can and should be extended using the tools of medicine and, on the other, the contrasting value of allowing death to occur "with dignity" or without "artificial" technological prolongation. The ways we respond, inside the hospital, to the contradictory emotions, and to the conditions of the very sick people who inspire those emotions, result from the manner in which the hospital system structures treatments and organizes the experiences of patients and their families. Our responses result, too, from historical developments in the doctor-patient relationship, the institutionalization of "patient autonomy," and the cultural traditions we as individuals draw on to invest with meaning the "appropriate" moment for death.
Struggling to find ways to either stave off death or arrange for "good" deaths, hospital staff, together with the powerful technologies that are part of hospitals today, can also allow a third possibility -- a prolonged hovering at the threshold between life and death. Instead of death, the hospital opens up an indefinite period of waiting during which patients do not cross that threshold until it is decided when it is time for them to die. Scenarios of patients being maintained at the threshold, and of dilemmas that arise there about what to do and when, are common.
I carried out my research at three community hospitals in California for a total of two years (1997 and 1999-2000). I observed the course of over a hundred critically ill patients who died (and many more who did not). I followed them through procedure after procedure, day after day and sometimes week after week, and spoke with about a third of them -- with most, quite briefly. I talked, generally repeatedly, with scores of family members whose relatives were hospitalized. I stood with families at patients' bedsides for brief chats, sat in waiting rooms with them while they cried, paced, made phone calls, and wrung their hands, and had coffee with them in hospital cafeterias as they talked at length about the patient's history and condition and the dilemmas they faced while trying to fit this hospitalization into their lives and think about long-term caregiving. They constructed hypothetical scenarios of recovery or decline that changed, sometimes daily, as the patient's condition improved or worsened. They considered choices they might have to make soon, whether they would discuss those choices with other family and friends, whether others were capable of hearing and talking about the situation. Some spoke with conviction about doing everything they could to keep their relative alive. Some said they did not know what they wanted for the patient or what the patient would want now. I watched them react to information from doctors -- information that meant a decision had to be made about, for example, amputating a gangrenous limb in order to give the patient more time, or transferring a relative from the intensive care unit to a hospital for long-term, ventilator-dependent patients, or arranging for death as soon as all the relatives were able to assemble, or the need to bring an end to suffering. Often I watched family members slowly change their minds about their relative's condition, saw them realize, after days or weeks and after many conversations with physicians and nurses, that their relative was now, in fact, dying.
At each of the hospitals, I also interviewed, watched, followed around, listened to, and talked about patients' conditions and treatments with health professionals: doctors, nurses, social workers, and respiratory, physical, occupational, and speech therapists. Almost everyone showed compassion. Almost everyone was efficient. I had access to patients' medical charts, to rounds on various hospital units, and to some staff meetings and family-staff conferences. I attended team meetings on some medical units every week for a year. In one ICU, I accompanied the medical team on bedside rounds several times a week for eighteen months.
I listened to nurses talk to family members and respond to their questions but never state outright that a patient would soon die. I watched as nurses tried to communicate with very sick patients who could barely speak. In the ICU, nurses monitored machines, gave intravenous medications, never took their eyes off a patient (even while writing in the medical chart), and spoke reassuringly to patients and families. They were a conduit of information to doctors. They told me how their day-to-day tasks of making patients comfortable and keeping them alive worked as advocacy on behalf of patients. On the medical floors, nurses gave medications, organized the flow of patients from procedure to procedure and out of the hospital, and explained what was going on to families. They joked at the impossible circumstances of their work -- when, for example, they learned that impoverished homeless patients who required extensive medical follow-up had been discharged to the streets, or when very old people clearly at the end of their lives were given life-prolonging treatments. They complained often that they had too many patients to give them the kind of care they wanted to give.
I listened as doctors asked nurses, respiratory therapists, and other hospital staff about patients' physiological functions and asked nurses and social workers about how families were coping. I watched them do surgical procedures on patients in the ICU. I listened to their deliberations about what to do next and when, often when all the options seemed hopeless. I stood with them in the hallways when they told family members what they wanted to do next to a patient, and why. When families asked questions about life support and prognosis, I listened to doctors explain why, for example, a comatose patient connected to a mechanical ventilator would not recover, or how medicine could not know for sure if a condition was irreversible but felt strongly that it was. I watched them tell extremely ill patients who would not recover that staff could make them comfortable with medications and allow them to die, and then I listened to them explain to families how dying would physiologically occur and what it would look like.
I followed respiratory therapists as they watched mechanical ventilators and adjusted oxygen flow. I stood at bedsides while they worked with doctors to put breathing tubes carefully, correctly, but swiftly down patients' windpipes. I accompanied them as they calmed patients and tried to make the oxygen masks more comfortable, tested lung capacity, wrote everything into the medical chart.
I sat in social workers' offices as they talked on the phone with families about meetings with doctors, nursing home placement, taking the patient home to die, and the necessity of filling out Medicaid forms. I walked the hospital corridors with them as they sought out discharge planners and physicians, and I sat in on their visits with patients. Sometimes they acted as patients' counselors or therapists, talking about what was meaningful at this time in their lives, simply being present to listen. Often, too, they worked as bureaucrats, trying to assess which less-costly unit the patient could be moved to and talking with patients and families about the timing for a move to a nursing home or hospice care.
I stood at bedsides with chaplains who led prayer services for patients who were close to death. I listened as they asked families what was important about their faith, what was important for the patient, and what they would like to do to mark the passing of their relative.
I sat with discharge planners as they complained that a patient's care was no longer reimbursed by Medicare and that the hospital would have to cover the costs. I listened as they talked about the inherent conflict in their job -- the pressure to move patients out of the hospital in a cost-effective manner even as doctors refused to discharge very sick patients.
After my two years of observation, I learned that each patient's hospital stay is seen by medical personnel through the lens of the passage of time, through the institutional demand to move through time with economic and clinical efficiency. For doctors and nurses in the hospital, the timing of decisions and procedures (that is, the speed or slowness with which they occur), the ability to get things done in a timely way, the obstacles to that timeliness, and the timing of death all represent overarching concerns. Time is the marker for things health professionals think should happen and for things that must get done, and it weighs heavily on everyone who works in a hospital.
The scenes I witnessed were sometimes unsettling, yet it is important to emphasize that nothing was unique or unusual. People who work in hospitals across the United States will recognize these scenarios -- dependence on the mechanical ventilator, extended periods of watching a patient hover at the threshold of death, endless and perhaps "futile" procedures, the decision to insert a feeding tube or withdraw life support, and all manner of dying itself. Many doctors and nurses have written about these things in their own books and articles as ordinary occurrences, all part of hospital routine. They are all considered "normal" because they have been normalized over time. In each of the twenty-seven patients' stories I reconstruct, the death scenario -- or the death-in-life scenario -- is clearly the inevitable outcome of ways in which the hospital system guides events and individual choices. I have chosen these particular stories because, taken together, they represent a range of hospital phenomena and patient and family experience that are considered problematic in the public discourse. They are not meant to be considered, individually or as a group, "typical" of adult deaths or of medical care in hospitals across the United States. In my years of observations, I saw an equal proportion of hospital deaths that no one considered problematic. Yet, the events I describe here are common. And that is troubling.
My experience in these hospitals led me to recognize and consider four topics that have been missing from the growing conversation about problematic death, and this book aims to describe them. First, the hospital system shapes medical practice and practitioner and patient experience, yet that system has not often been acknowledged in the ongoing lay discussion of problematic dying. (Health care policy analysts, health economists, and a few outspoken physician critics have, however, long been concerned with the ways in which the health care system operates to determine forms of dying.) The hospital system organizes how lifesaving biomedical technologies are used as well as the ways in which day-to-day activities are carried out. Together the bureaucracy, the technologies, and ordinary medical practices create the phenomenon of the threshold between life and death, and the waiting that occurs there, and thus spark the conversation of complaint. At that threshold, the hospital acts as a laboratory, an experimental space in which new kinds of persons, new forms of life itself, are made and questions are raised about what it is to be alive and to be human.
Second, the rhetoric used by hospital staff, families, and patients to make sense of an individual life when it hovers at the gray zone is not acknowledged in the public conversation for its powerful role in determining when to allow death to happen. Though that rhetoric circulates widely in American society and thus seems "natural" in the hospital setting, it is deployed and negotiated at the bedside of very sick patients to control the dying transition.
The next overlooked topic concerns the hidden kinds of knowledge that doctors, nurses, and other health professionals share among themselves about hospital procedures, hospital routines, and what needs to be done at the threshold between life and death. The information they possess stands in sharp contrast to what patients and families experience and grasp when they enter the hospital and confront critical illness. Despite the widespread critique of the overuse of medical treatments and the apparent desire for change, professional knowledge of what goes on in the hospital when death is near and why, as well as hospital staff's expectations about patient and family responsibility, remains sequestered there.
Lastly, neither the management of the threshold nor the way death occurs in the hospital is inevitable. Both are complicated cultural fabrications. Our understandings of how hospital death occurs and is staved off, and of what is "right" and "wrong" with either, are determined by historical trends in politics, medicine, and social life. Those include the changing power relations among the institutions of science, religion, and the law; the ways in which biomedical technologies have come to be used and valued; developments in Medicare and other federal regulations and policies; the transformation over the twentieth century of ideas about the body, the person, and old age; and the evolving roles of medical specialists, ethicists, legal experts, managers, hospital patients, and families in that transformation.
Like the ordinary hospital practices that have become cause for so much complaint, medicine, too, derives from complex social sources that contribute to the tenacity of ideas about "how things are done." Medicine today is a web of complex social institutions, diverse kinds of knowledge, fragmented systems of care, and a broad array of clinical practices. In all those ways, it has become the most powerful framework in the United States for understanding critical illness and for approaching the dying. There is a widespread demand to have control at the end of life through having greater choice. This presents a paradox, for medicine both provides and constrains that choice. It offers an abundance of treatments. But it also organizes -- perhaps in the hospital most dramatically -- how one can know the problems of the body, what makes a person alive or dead, what the role of the family should be, and the relations among patients, families, and health professionals. It declares what is important to know and what needs to be imagined. Then, it ignores other, perhaps equally important things. Thus, it produces particular forms of dying.
With the tools of anthropology, by traveling into the hidden yet taken-for-granted world of the hospital and by closely observing what occurs in territory both familiar and strange, I wanted to dismantle any simple views of technological overload and lack of personal command that so commonly characterize how American hospital dying is understood and to expand the concept to include the institutional structures and cultural forces that shape it. I wanted to understand what goes on at the threshold between life and death, to see if I could discern the range of activities that makes hospital patients poised there such a common, and yet unwanted, occurrence. I also wanted to investigate some of the paradoxes that the hospital world sets up, both for the people who work there and for the patients and families who come through it, because, like any highly complex institution, the hospital is a frustrating and demanding place, full of contradictions and practices that seem to serve only the bureaucracy itself. Finally, I wanted to explore the historical sources of hospital culture that have shaped the way people see the pressure of time, the patient's condition, what must be done, and what cannot be done, and that have forced so many to make what seem to be impossible choices.
In the hospitals I saw several phenomena in play -- the work of medicine and the workings of the hospital, the dominant ethics of individualism that gave rise to the public conversation about control and "better dying," and the myriad individual responses to critical illness and to the hospital itself -- and I wanted to understand how, together, they are implicated in how we come to assess and negotiate what to do when a person is at the threshold. But I also realized that an even broader concern is at stake for everyone in American society; for entangled with shifting notions of life at the end of life and the limits and promise of medical care is an ambivalent social responsibility toward the very vulnerable in our midst.
Natives and Strangers in the Territory of Dying
As an anthropologist, I wanted to try to understand and then describe how the American hospital organizes dying, how it makes certain kinds of deaths possible and inevitable, and to do so, I entered the lives of patients and families and the workplaces of hospital staff. But every time I entered that strange world where treatments, rules, technologies, expertise, compassion, and tragedy combine, I felt caught in the conceptual conundrum that anthropologist Clifford Geertz has described (now famously) as "a scientistic worry about being insufficiently detached" and a simultaneous "humanistic worry about being insufficiently engaged." There are two tensions that characterize anthropological work: tensions that arise between immersion and detachment and between engaged participation and dispassionate reporting. These have been framed traditionally in "insider/outsider" terms, with "insider" awareness and unself-conscious response on the one hand and "outsider" analytic discovery that enables comparison on the other. These tensions are thought to be productive, eventually yielding interpretive insights through the "double consciousness" produced by tacking between different realms of understanding -- insider and outsider, native and stranger. When I entered the world of hospital medicine, I began to wonder, who is insider, who outsider -- and where did I, the anthropologist, fit? What did the answer to these questions mean for what I was seeing and for how I was interpreting hospital practices and the dramas surrounding them?
These questions nagged at me because I was troubled about my own relationship to what I wanted to learn. I felt myself to be both insider and outsider. The lack of a suitable label for my position in relation to the hospital and to the people I met and the practices I observed made me somewhat uneasy every time I walked through hospital doors. Yet my uneasiness, my lack of definitive status, helped me think through the contradictions I encountered, the differences of feeling and understanding between doctors and nurses, between health professionals and families, indeed, among all the players. My fluctuating position enabled me to hear the cacophony of their voices -- all their different kinds of truths -- and to explore the criteria on which those truths were established.
I was studying phenomena characterized as problematic in my own society, and I was observing activities considered troublesome yet ordinary, expected yet feared. Since much of what I saw seemed routine to me (after all, the hospitals are in "my culture"), and since the rhetoric that shapes the practices surrounding dying was part of my own, ordinary vocabulary (I, too, favor "dignified" dying and a high "quality of life"), I initially wondered how I could achieve an outsider's "objective" distance to appraise what was going on. Like most Americans, I am generally familiar with the workings of the hospital, any hospital. I have been a hospital patient, though not with a life-threatening illness, and have visited friends and relatives there. I had also conducted research in hospitals prior to this project. Most important, I am a participant in the widespread dialogue about problematic death. I share with many others the wish for a death (far in the future) that is somehow natural, whatever that means, and not fraught with dilemmas about maintaining the body when consciousness and life seem gone. I participate in the making of the tension that is at the heart of the "problem" of death because I, too, want what is considered "the best" medical treatment (perhaps high-tech, definitely scientifically informed) for family and friends who become ill. More broadly, I am native to a culture that values individualism, the necessity of speaking and being heard, the right to know about disease and treatment and to have options. There is no doubt that I am deeply entrenched here, an insider/native in the land of biomedical explanation and an only-sometimes critic within its logic.
On the other hand, at the start of my research at least, I was also an outsider to the organizational principles of hospital treatment and a stranger to what health professionals are thinking when death seems near. I did not have the knowledge of disease, physical decline, and treatments that doctors and nurses have. I did not know how many lifesaving procedures existed or what regulations and policies guided hospital activity. I was ignorant about the constant change and turmoil in the world of health care finance and of the extent to which those changes affect hospital work and patients' experiences. I was unaware of the extent to which, in the hospital, choice is inevitably encumbered by bureaucracy. Like any sick person's family member, I learned the rules of the institution, the reasons for specific procedures, the limits and powers of technology, and some things about bodily systems and disease processes by sitting with patients and talking with the nurses, doctors, and social workers who came by. But unlike family members, I sat by hundreds of beds, and I began to learn how health professionals think about what they do and how they decide what is important. And so, at some level, I became an insider to two ways of knowing the hospital world -- the staff's and the family's.
Eventually, I came to wonder whether anyone was entirely comfortable, entirely an insider in such an out-of-this-world place. From one perspective, all hospital staff are insiders. They have daily and weekly routines that they take for granted. They have specialized languages. They know the rules and rituals, the shortcuts, the machinery and the symbols, the ways to get around. They know what counts as normal and ordinary in terms of the progress of disease, medicine's responses, coworkers' activities, and institutional procedures. They know the policies that affect their particular jobs, even if they balk at some of them. Though much must be learned -- from knowledge of the sick body to the uses of medical equipment, from the etiquette of doctor-nurse and staff-patient interactions to hospital rules governing patient placement and movement -- those things are, ultimately, assumed by hospital staff to be natural to the place, to be part of its very constitution.
But even what seems "natural" can undergo change, and hospitals are places of ongoing social change and reorganization. During my observations, hospitals in the greater metropolitan area where I work merged and closed, and new arrangements for patient treatment were forged between and among hospital groups. Certain specialized units closed in some hospitals; others opened or expanded in size. Nurses periodically went on strike. In one hospital, physicians changed the lines of authority and communication in the intensive care unit, and the organizational hierarchy and the role of ICU nurses changed twice. In another hospital, ethics committee members proposed new guidelines for Do Not Resuscitate orders that were debated throughout the hospital for months. In yet another, "palliative care" became a distinctive form of end-of-life medical practice. All of these changes became part of the "insider" knowledge held by health professionals.
Hospitals, however, are highly complex, small societies, unknowable by any one individual. So when, for example, the frame of reference shifts to include the changes in power relations between administrators and medical staff that are brought about by health care finance reforms, doctors and nurses, too, feel that they are outsiders. They feel alienated and marooned in a corporate business landscape where they have no authority to care for patients in the ways they were taught were ideal. For a long time, and certainly during my research, physicians and nurses have felt besieged by corporate cost-saving demands. Across the United States, hospitals' first cost-cutting measure seems to be to reduce the number of nurses they employ. Thus, nurses are the most vulnerable "natives" in the system because their employment is frequently at stake. Physicians experience a different sort of vulnerability and alienation. They feel like expendable commodities at the service of the bureaucracy and thrust into unwanted negotiations with hospital administrations and managed care companies about how fast they can discharge patients and how few procedures (and which ones) they can prescribe. Their work is under constant surveillance by utilization review committees, risk management departments, and those whose job it is to watch the bottom line. Both nurses and doctors complain about working in a system that above all does not respond to their professional priorities, a system that is no longer deemed habitable by those whose job it is to treat and care for patients. One young physician I spoke with characterized the first year of her residency training in internal medicine as a period of learning to be disciplined by the bureaucracy to be a cog in the system. Patients were merely an epiphenomenon, she remarked, the objects acted on to ensure the smooth running of the institution.
And what about the patients and families who come and go, who enter the hospital once or circulate through it repeatedly? To what degree are they insiders or outsiders? On the one hand, they are definitely outsiders. Most of them have only vague knowledge, if any, of human physiology and disease, medical procedures, or those organizational features of the hospital that determine what happens to patients. Most patients and families struggle to make sense of the routines, sights, sounds, language, and personnel inside what they see as a strange and sometimes terrifying place. They are visitors, travelers outside their own lives and severed by medical necessity from their own biographies. Yet, on the other hand, whether patients and families are born in the United States or are recent immigrants, whether they are highly educated or not, most want access to the hospital's tools when they are in crisis. Medicine, the dominant system by which we understand the human organism and its malfunctions and diseases, can stave off death regardless of the patient's condition, age, or degree of frailty. Almost everyone knows this, and this knowledge is always in the background of people's awareness when they are in the hospital environment. In that sense, patients and families are insiders indeed. They are also true insiders in another sense -- they are participants in the dying. Although they are not native to the complex ways the hospital works, they are the real stakeholders -- in how death is made and how the hospital makes death -- in a way that the hospital staff and that I, the anthropologist, could not be.
While doing my research, I felt more like the professional staff than like the patients and families for a variety of reasons. I was not ill or receiving treatment. Unlike a patient's family member, my observations and questions were not clouded by worry, anxiety, grief, or emotional turmoil, nor was I faced with monumental decisions. For staff, the hospital is a fixed, permanent place and patients are transitional objects that must be moved along; for staff, as for me, the hospital is where they go on a regular schedule to do a known job. For patients and families, the hospital is the transitional thing -- a stressful limbo -- and being there heightens their sense of physical and emotional vulnerability and lack of control.
I could empathize with patients and families whenever I recalled the hospitalizations of my own relatives, but my empathy could go only so far because I lived outside their experience and suffering and nothing was presently at stake for me. I was aware that at any time I could be in their shoes, but unless that happened, I could not share the intensity of their feelings or the meanings they derived from their only-partial understanding of the hospital environment and what went on in it. For them everything that happened in the hospital was unwanted and disconnected from their ordinary lives. In contrast, like hospital staff, I quickly learned that everything was routine, many things were predictable, and I could interpret as ordinary occurrences the crises and dislocations that patients and families faced. And I realized that, along with staff, I am implicated in the normalizing of hospital routines simply because, after a few months of observations, I, too, came to view the routines and events and bureaucratic logic as ordinary and as "natural" to the place.
Emotion and the Ethnographer
When I told people I was studying how death occurs in the hospital, the most frequent response was "How could you do that? Isn't it depressing?" I replied that I had great empathy for the very ill patients and shocked and grieving families I came to know, as well as for the doctors and nurses, who carry enormous responsibility. I also had my own fears and sense of horror that arose in the face of terrible disease and sometimes equally terrible treatments. But these were tempered, for me, by the analytic challenge each case presented: Why is this scene unfolding in this way? How is the hospital making this death? What are the sources of ambivalence and contradiction -- about treatment, death, and life itself? Most important, I was observing strangers. I had no special bond with any of the patients or families, nor was I acquainted with any of the hospital staff before my research began. Because I was emotionally detached, watching hospital activity did not depress me.
Nonetheless, repeatedly watching death, and watching people poised on the threshold between life and death, from so close a perspective has had an emotional impact on me that is difficult to describe because those scenes were both hard and not hard to observe. I remained emotionally detached in part because I was privy to such an essential moment without being a player in the decisions that surrounded it and without experiencing the grief and guilt that accompanied it. Task-oriented, I was trying to understand what I was seeing by comparing different points of view within a disjointed system. One can look at language, and perhaps especially the language of emotion, in two ways. One is to view language as representing experience, and from that perspective my vocabulary to describe the impact of what I witnessed seems impoverished. My struggle to articulate my emotions reveals that my "feelings" and "thoughts" cannot so easily be separated. How to describe witnessing young and old deaths, expected and unexpected deaths; watching health care professionals stave death off or acknowledge its inevitability and prepare for it; seeing the surprise, incomprehension, and chaos that arise within families; being in the presence of dead bodies? I was simultaneously sad and curious, anxious for families, apprehensive about diagnoses, appalled at what patients went through, and at times very uncomfortable about interfering (sometimes simply by being present, sometimes by asking questions) in others' work and lives. My emotions regarding patient and family suffering were inseparable from my emotions about being a careful researcher, constantly on guard about the impact of my intrusion on staff routines and into patient and family privacy.
Much of the time emotions did not arise from "inside" me but were generated by a particular situation -- the tense conference in which the medical team asked for a decision, but the family could not possibly choose; the exhausted family members waiting anxiously at the bedside; the technical, purposeful, and tension-filled lifesaving activity that gave rise to ethical dilemmas for some hospital staff and hope for families; the humorous banter and macabre jokes shared among medical and nursing staff; the frustration everyone felt when things did not go well; the immense sadness felt by doctors and nurses when their patients died unexpectedly; the shock and grief that families experienced when their relatives died without, seemingly, any warning signs. In such instances, I absorbed the feelings in the room, though I did not fully share them.
The second way to view language is that it actually creates experience and emotion, that our vocabularies shape and in fact give us what we feel and what we know. The language of medicine and of hospital routines and hospital death is deeply entrenched in the way things work there, and it guides what families, especially, are expected to feel. It is rational and instrumental. It forces objectivity and decisiveness. Frustration, grief, uncertainty, fear, and surprise are given voice (occasionally by hospital staff as well as by patients and families), but through a vocabulary of pragmatism that emphasizes problem-solving and decision-making. Such language ignores or redirects incoherence, anxiety, breakdown, diffuse suffering, and any other expression of affect that lacks rationality. Similarly, the talk about "control" and "dignity" as death approaches, about "the good death," that is common among staff, patients, and families can only be known through institutional activity that organizes how these terms are given shape within the hospital world. Talk about grief and "grief work" operates in a similar fashion. Therapy, support groups, and self-help books are available to help manage and structure the stages of grief and thus to define it. Emotional understanding of dying and grieving is shaped through phrases such as "being ready to die," "knowing it is time to die," and "accepting death," phrases that delimit emotion as instrumental and organized -- not inchoate and overwhelming -- experience. That kind of language normalizes hospital deaths. In addition, the particular language used to describe the existential features of the patient's condition -- especially his "quality of life" and degree of "suffering" -- shapes and even determines the time for his death. And it was the vocabulary through which I experienced -- and thus wrote about -- the dying transition.
There is another difficulty in describing what I feel about all of this. My opinions, indeed my moral stance and my values, regarding what I observed are not firm. Though I began my research holding the common, negative opinion about "being attached to machines," and I was against "artificially prolonging death," I quickly learned that it is not simple to make those stock phrases -- and the assumptions that surround them -- specific. For example, "life support" is not a discrete activity or procedure, and thus its presence and role are not always easy to discern. "Artificial life prolongation," though seldom wanted in the abstract, is rarely perceived as such by the family at the bedside. Hope for a return to "normal" is ever-present while there is life. Yet life itself can be a matter of debate. Faith in medical treatment is tenacious and powerful, and hope for continued life usually trumps the desire to bring an end to suffering. Family feelings for the person-now-patient are sometimes expressed as demands that physicians extend treatments past the point of effectiveness. For their part, doctors often use equivocal language when speaking with families about the chance for "meaningful" survival. Thus, emotion, opinion, and "fact" become impossible to separate.
If emotions can be conceptualized as an expression of values or apprehensions, as anthropologist Catherine Lutz suggests, then mine, given what I have seen, remain decidedly mixed and unresolved. I learned, while I watched many "life-and-death" dramas unfold, that I could not possibly stand in judgment of other people's decisions. What if the person lying in that bed, attached to tubes, unconscious, on the brink of death, were my parent or my child? After two years of observing such scenes, I think I know what I would want or what I would do, how long I would ask for life-sustaining procedures, and how long I would maintain hope -- but I learned also that I cannot be so sure. I have learned enough to know that if something like this happens to me or my loved ones, I'll be equally unnerved, equally caught up in the pathways, the waiting, and the rhetoric that this book details. At some level, I learned that all you can do is the best you can do at the moment, and if you love the person who lies in a hospital bed at the threshold, you want that person's life to be longer.
The medical, nursing, and social work staff welcomed me to their units and graciously and thoughtfully responded to my queries. No one ever asked me to stop observing them. Acutely aware of how hospitals make death problematic, they hoped that an anthropologist, someone with an outsider's critical eye, would be able to suggest some solutions. They were not opposed to criticism of hospital practice. "How can we make death better?" was the question they posed to me. Like staff, families and patients also welcomed me and my research endeavors. Only a few patients who were able to talk did not want to do so, and only three families did not want me present at the bedside or at conferences with the medical team. After a meeting with the health care team or after the tape-recording of a private conversation, family members sometimes asked, "Did you get the information you needed?" Even in their grief and exhaustion, they, like the staff, hoped I would be able to learn things that might ease the treacherous journey through the hospital, might provide some guidelines that would help "make death better."
I had intruded on patients' privacy and on staff work routines, and I felt I owed all of them something -- some sort of translation of their experience into a practical solution for the sorrows of families and the burdens of hospital staff. Part of me wanted to be an engaged activist and work toward the worthy goal of "improving" hospital death. But that would have meant paying closest attention to an agenda for political and social change and compromising my goal of "seeing," as comprehensively as one person working alone could, the multiple strands of cultural formation, institutional constraint, and production of power that make hospital death happen. To the extent I could, I needed to stand outside the logic of the hospital world, including its desire for change. I thought that if I was able to pay attention to the activism I encountered but remain distanced from it, to be sympathetic to the activists' goals while also being critical of the context of their work, and to concentrate on looking at how cultural forms emerge and are organized, my study had the potential to be more analytically useful for a practical reconsideration of the ways American death is made.
My research made it clear that I could not provide direct solutions to the "problem" of hospital dying -- that problem is deeply, perhaps inextricably embedded in the political and economic organization of American medical care, the logic of hospital routines, the values and language associated with individualism, and a complex history of the ways in which doctors have come to understand both disease and their patients and in which medical practices have shaped the nature of relationships among disease, its management, old age, and the end of life. Within this complex context, I map for readers the routes toward dying in American hospitals. I show what the different roads to that destination look like, their impact on those who travel them, and some of the cultural foundations on which they were built. I show how all individual decisions about travel on those roads (which byway to take, when to stop, when to speed up) are mostly not "decisions" at all, but rather are determined by the existing grid -- the structural patterns of the hospital system. That system works by forcing decision-making on us all, by claiming that we have choices to make; and my discussion of how the system operates does not and cannot change that, for the ideologies and values that support the system reach deep into American society. My discussion does show, however, how we got into the present dilemma and what its contemporary features look like. The web of routines, regulations, and finance mechanisms that both coordinate and fragment the health care delivery system, of which the hospital is one part, cannot easily be dismantled or abandoned. And the values of individualism and individual rights, along with the powerful rhetoric that supports those values and guides many of us in deciding what to do at the threshold of death, cannot easily be ignored. But they can be described. My aim is to show why the so-desired "unproblematic" death is so hard to attain. My hope is that what I reveal can be a useful guide for all who face a journey through the hospital in the future.
Copyright © 2005 by Sharon R. Kaufman
How American Hospitals Shape the End of Life
And a Time to Die
How American Hospitals Shape the End of Life
That fear is justified. It is also historically unprecedented. In the past thirty years, the advent of medical technology capable of sustaining life without restoring health, the expectation that a critically ill person need not die, and the conviction that medicine should routinely thwart death have significantly changed where, when, and how Americans die and put us all in the position of doing something about death.
In a penetrating and revelatory study, medical anthropologist Sharon R. Kaufman examines the powerful center of those changes -- the hospital, where most Americans die today. In the hospital world, the deep, irresolvable tension between the urge to extend life at all costs and the desire to allow "letting go" is rarely acknowledged, yet it underlies everything that happens there among patients, families, and health professionals. Over the course of two years, Kaufman observed and interviewed critically ill patients, their families, doctors, nurses, and other hospital staff at three community hospitals. In...And a Time to Die, her research places us at the heart of that science-driven yet fractured and often irrational world of health care delivery, where empathetic yet frustrated, hard-working yet constrained professionals both respond to and create the anxieties and often inchoate expectations of patients and families, who must make "decisions" they are ill-prepared to make.
Filled with actual conversations between patients and doctors, families and hospital staff,...And a Time to Die clearly and carefully exposes the reasons for complicated questions about medical care at the end of life: for example, why "heroic" treatment so often overrides "humane" care; why patients and families are ambivalent about choosing death though they claim to want control; what constitutes quality of life and life itself; and, ultimately, why a "good" death is so elusive.
In elegant, compelling prose, Kaufman links the experiences of patients and families, the work of hospital staff, and the ramifications of institutional bureaucracy to show the invisible power of the hospital system itself -- its rules, mandates, and daily activity -- in shaping death and our individual experience of it.
...And a Time to Die is a provocative, illuminating, and necessary read for anyone working in or navigating the health care system today, providing a much-needed road map to the disorienting territory of the hospital, where we all are asked to make life-and-death choices.