An excerpt from
And a Time to Die
How American Hospitals Shape the End of Life
Sharon R. Kaufman
Death and Hospital Culture
…What death is becomes a matter of deciding at what point a person should be treated as having died, in respect of the cessation of various types of bodily function…. Death becomes a point zero: it is nothing more or less than the moment at which human control over human existence finds an outer limit.
In the United States during the twentieth century, death moved out of the home and into medical institutions. Today, more Americans die in hospitals than anywhere else, and the most frequent response to critical illness there is to try to stave off death with the most sophisticated technological means available. Approximately one-quarter of all hospitalized patients are treated in intensive care or cardiac care units before they die.
Not all family members experience the death of a loved one as Elisabeth Hansot did, yet over the past twenty-five years many like her—family members and health professionals alike—have contributed to a conversation that has become increasingly prominent in American life. The discourse about the problem of death has been promulgated and spread by articulate and activist health care consumers and by growing numbers of physicians, nurses, ethicists, health care economists, and others critical of hospital practices. Its essential feature is the notion—born of the values of autonomy and individual rights—of patient control over decision-making at life's end. Patient (and family) control is considered essential for reducing or eliminating the pain, suffering, loneliness, and humiliation that are perceived to accompany life-prolonging (or death-prolonging) medical treatments. Inevitably, conflict arises between patient determination of the extent of medical intervention and physician or institutional domination of treatments near death. This conflict is played out in countless daily hospital scenarios as health professionals, patients, and families struggle in the face of tensions that have been created in choosing treatments labeled "heroic" or "humane" and in defining responsible, ethical medical care.
In efforts to reform the way Americans die, proponents of patient control and choice have focused their attention mostly on individual initiative—for example, choosing home hospice over hospital care, writing living wills or other advance directives, and participating in grass-roots efforts to supplant or enhance standard medical care with family and community involvement. All of those efforts are based on the activities of an educated, informed middle class, and they have generated a great deal of media attention. Another example of individual initiative is evident in the widely felt need to stockpile sleeping pills, sedatives, or other medications so that death can be timed according to one's desires.
But the problem of death is broader and deeper than the widely publicized quandaries of individual choice-making. Public discussion has much less often engaged the impacts of the structural environment in which most deaths occur—a patchwork health care delivery system designed to save life and to treat patients with acute, short-term medical problems. Nor does that public discussion engage the absence of access to medical services among the poor. However, a number of physicians, health care analysts, and other observers are drawing attention to the economic structure of health care delivery, asserting that dying can only be made "better" by instituting significant changes in the financing of end-of-life medical care. To a great extent, current payment schemes guide treatments and shuttle patients from institution to institution.
The focus on individual autonomy and on reforms to enhance self-determination also downplays the voices of those without adequate access to medical services and/or without political and media clout. Many marginalized people, for example, are worried about the widespread debate surrounding the right to euthanasia. Their anxiety, that the legalization of euthanasia could lead to the unwanted deaths of persons deemed "less worthy" by others, gets far less attention in public discourse than the cry for the right to control the time of one's own dying.
Though it expressed only certain concerns and reflected only some voices, by 1990 the public discourse about the problem of death and the desire to make it better was loud and clear. Throughout the 1990s it grew ever louder and was given substance in law, medicine, media reports, the arts, and many kinds of professional and lay activity. It was apparent, for example, in legal decisions such as the federal Patient Self-Determination Act of 1990 (a result of the influence of academic bioethics on hospital policy, in which all hospital patients must be informed of their right to make treatment choices) and in the U.S. Supreme Court's consideration of physician-assisted suicide in 1997. It was heard in the vote of the people in Oregon to legalize euthanasia in 1994 (reaffirmed in 1997). Television and radio also took up the subject, airing programs in which dying persons and their families and friends were interviewed on such topics as family care of a dying relative, advance directives, and euthanasia. Newspapers across the country ran articles about lack of communication between patients and doctors, the overuse of technology, and the problems of managed care. Popular books were published, advocating personal control of one's own death. The hospice movement became better known as an alternative to the high-tech hospital. Jack Kevorkian inspired both fascination and ambivalence. Many case studies in medical journals and personal testimonials in newspaper opinion pages told of "unwanted" kinds of dying.
The conversation about problematic dying also led to a plethora of community education efforts to change the ways in which death occurs and to new medical school and medical residency curricula to sensitize students and young doctors to the inevitability and naturalness of death. It was the subject of a Pulitzer Prize-winning play, Wit (first performed in 1997 in theaters, later in academic medical centers, and eventually made into a television movie), depicting the tyranny and humiliation of aggressive treatment for those who die in teaching hospitals. Public policy organizations developed goals for improved end-of-life care that does not prolong agonized dying. By now there is exceptionally far-reaching discussion about the tensions created by standard medical practice thought to have run amok in an obsolete health care delivery system designed only for the diagnosis and treatment of acute medical problems.
The end of life in the hospital cannot be disentangled from the operational details of a complex social/legal/medical institution that strictly guides the flow of events and how they are understood. The hospital is a place of disconnection. When a death is near, it is a place of bureaucratic logic without logical purpose, a place where everyone muddles through regulated-yet-improvised, routine-yet-disquieting arrangements of medical algorithms, professional relations, and strategies for getting patients through the system. The contemporary hospital, with its remarkable tools and complicated ways of organizing health professionals' work and moving patients and families through the system, is on the cutting edge of culture-making. Its systems, techniques, and logic shape the forms of dying that occur there.
All cultures contain contradictions and hospital culture is no exception. I encountered four striking examples of this. First, though patient autonomy (and its extension, in practical terms, to family members) serves as one important source of an ethic of medical practice, the notion of patient autonomy is actually applied only within a narrow sphere—decision-making about specific medical treatments offered by individual physicians. Further constraint comes from a constellation of institutional imperatives. Thus, while patient and family decision-making is considered paramount, decisions, when they are made at all, are constrained by hospital rules, reimbursement mechanisms, and standards of care. The onus of responsibility for deciding what to want often is on the patient or family, yet they rarely have an informed sense of what is best. Scenarios in which families are offered choice about the goals of medical treatment when death is near reveal the dark side of autonomy—full of anguish, guilt, and above all the absence of knowledge about medical outcomes. Patients and families are given choices but only among the options made available by hospital norms and regulations and within the framework of the almost unstoppable march of treatment. Patients and families do not know and cannot know what to want when reacting to a complicated system of rules that is strange to them. Given this system, patients only want to breathe, to escape the place, to get better, or to die.
Second, other than in relation to certain kinds of diseases (e.g., terminal cancer or end-stage AIDS), death is rarely spoken of or foreseen until shortly before it occurs. Medical care emphasizes the stabilization and normalization of organ systems and the gathering of laboratory data in service of that stabilization. Especially in the intensive care unit, concrete life-sustaining activities (e.g., mechanical ventilation, medication to stabilize blood pressure) preclude the anticipation of death. Clinical medicine in the ICU is like surgery—its gaze falls only on a carefully circumscribed field, the analyzable interior of the body. A waning life is rendered invisible, or nearly so, in the reading and then treating of signs of the body's pathology. Disease is treated until there is no more physiologic response to therapy. Only then is death expected. Only then does it "need" to be acknowledged by hospital staff.
The third contradiction is that heroic, aggressive medical care now exists alongside "palliative care," a relatively new approach in which the reduction of pain, anxiety, and other symptoms of distress and the goal of overall comfort replace curative or stabilizing treatments when disease is no longer responsive to those treatments. However, the switch from curative to palliative activity is often fraught with conflict because the core purpose of hospital medical care is to maintain life. The organization of the institution pushes everyone toward lifesaving treatment, even when hospital staff, patients, or their families do not want to prolong dying.
Finally, although most people die in hospitals, hospitals are not structured for the kinds of deaths that people claim to want. For example, Medicare's reimbursement methods dominate what happens to the majority of hospital patients at the end of life. In its attempt to control spending over the last two decades, Medicare has systematically been eliminating its cost-based payments to hospitals and nursing homes, and hospitals are not explicitly reimbursed for providing palliative care. The institutional response to these cutbacks has been for nursing homes to transfer dying patients to hospitals to avoid the cost of intensive treatments, and for hospitals to discharge patients, once they are labeled "dying," so as not to incur the cost of palliative care. Simply put, at this point in history, dying people are not wanted in medical institutions, and it shows.