Minimizing the Dying in Death
Partly because of rescue's prominent role in the U.S. health care system, death seems distant from everyday life, bolstered by the “mythology” of CPR (Codagan, 2010; Timmermans, 1999). Many people believe that death comes only after an unforeseeably bad accident, or only after all contingencies are exhausted (Callahan, 2003). Media reporting of dramatic medical breakthroughs make them seem both routine and far-reaching. One could easily believe that because medical technology for rescue is both limitless and unknowable, scientific advances seem unending, and every contingency will be explored, one's death will be postponed for so long that it may never come at all.
Under such circumstances it seems neither necessary nor worthwhile to prepare for death, much less for dying. The concept of death rarely enters the national conversation. However, dying is even more troublesome than death, to be avoided even more strongly. Its proximity to nonbeing and inherent disorder are disturbing. Will it be painful? Many hope that death will come in sleep, unawares, so that they might avoid the dying part altogether. In the United States, dying must be properly contained so as to protect the living (Mellor & Shilling, 1993). Recognizable dying should certainly be removed from the public gaze.
Perhaps it is unsurprising, then, that clinicians are so reluctant to think of their patients as “dying.” Seriously ill patients are assumed still to have a future available to them, making them eligible for the gold standard of medical care in the United States until the last possible minute. To be dying in the hospital, by contrast, is to have no future, to be a second-class citizen compared to those deemed still rescuable (Chapple, 2010). Clinicians automatically apply advanced interventions to serious illness when initial efforts fail to arrest it, unless or until something happens to obviate the strategy. This rescue trajectory is compelling for staff, patients, and families alike. It is difficult not to be swept up in the enthusiasm for treatments that promise to reverse this or that complication. Ironically, when death's arrival proves that the patient was in fact dying, these same patients are blamed for costing too much, even though the prevailing social contract ensures that the U.S. health care system will fight to the death to rescue every life. Opportunities for a more meaningful process are lost.
Up to this point the weight of the national ideology falls on the side of attempting rescue from the threat of death rather than allowing death, even if hospice and/or palliative care are available as alternative modes of care. Market forces and reimbursement patterns reflect and reinforce the priority of overcoming adversity. The ideology that makes rescue so appealing also capitalizes the health care industry. Together they complicate any objective assessment of what constitutes value in health care delivery. This confusion manifests itself at the bedside of dying patients.
The business of the biomedical project, which profits from providing goods and services for patient management, and the altruism of health care, which attends to patient well-being, coexist uncomfortably in a market system. The awkward symbiosis between the two animates the U.S. hospital, whose very survival may depend on its ability to produce more time alive for patients while reducing their length of stay. Rescue maps onto commerce when technological patient management is invoiced. Throughput and productivity ride piggyback on rescue's rapid response, speeding up and quantifying every patient encounter for reimbursement.
Hospitals juggle their competing priorities, working to keep the business end from contaminating their altruistic public image. On one side of the equation are the countable items and services, to which price tags can be affixed: technological interventions, drugs, procedures, and vital sign monitoring. Interestingly, the very multiplicity of interventions confers legitimacy on a patient whose inherent dignity seems to command such investment. But they also bring alienation—so many specialized objects and actions attached to her body make her appear foreign to those who love her. Meanwhile, the priceless aspects of care are much less measurable, such as the compassion, trust, and relationship that grow from interactions between staff and patients and the education and training that permeate the hospital day. The immeasurable value of life itself forms the subtext of the acute care enterprise, not to mention the value of the particular lives that may be at stake. With such contrary forces at work, how is value to be understood?
Other industrialized countries have settled these questions with less confusion, lower costs, and better results. The burden of authenticating the social contract falls not on a commitment to rescue, but more straightforwardly on solidarity. This value is not unknown to mainstream U.S. ideology, but when self-reliance is driving the bus, social consciousness takes a back seat. Nations whose citizens have ready access to health care have demonstrated that it is less expensive and more effective to provide broad basic care than to fix problems after they have become severe, as shown in Figure 19.1. FIGURE 19.1 Why Does the U.S. Spend More Than Other Countries?
SOURCE: Engelhard, 2005, used by permission; adapted from Fuchs, 1993, p. 62.