The Best Laid Plans
Moskowitz, Ellen H., Nelson, James Lindemann, The Hastings Center Report
Estimates vary, but it seems safe to say that somewhere in the neighborhood of half of all deaths in America currently occur in hospitals. Many--perhaps most--Americans now spend their final days surrounded by the technologies of medicine, embedded in a highly specialized, sophisticated setting. While it is true that seriously ill people and their families generally seek out hospitals in the hopes of staving off death, it is also true that the anticipation of "hospitalized death" can be accompanied by a special kind of fear: that dying will be caught up in a medical juggernaut driven by a logic of its own, one less focused on human suffering and dignity than on the struggle to maintain vital functions.
In 1989, researchers began a large-scale study--the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment, more commonly known as SUPPORT--in an effort to achieve a clearer understanding of the character of dying in American hospitals. Funded by a multimillion-dollar series of Robert Wood Johnson Foundation grants, SUPPORT enrolled over 9,000 patients suffering from life-threatening illnesses in five U.S. teaching hospitals over a four-year period. Perhaps its most crucial research goal was to determine just what is to be feared about the experience of dying in American hospitals, and then to design, implement, and evaluate an intervention to improve the situation.
The project's first two-year phase aimed to move our sense of what dying in hospitals is like a new level of detailed, rigorously justified understanding. On the basis of this initial experience, SUPPORT investigators isolated several disturbing features of hospitalized dying and put together an intervention expressly designed to resolve them. The second two-year phase involved testing a very resource-rich intervention, contrasting the experiences of roughly 2,500 patients who received this special attention with a control group of equally ill patients who did not. Recently, the results of this experiment were revealed. Bluntly put, the intervention failed. In none of the areas identified as special problems by the study's first phase did the intervention achieve any improvement that was at all substantial or unambiguous.
The negative result is striking, given the experience, thoughtfullness, and resources available to the investigators. Why was physician behavior so largely unchallenged by the SUPPORT intervention? Was the intervention faulty? Are physicians simply too recalcitrant to change? Or is there something fundamentally wrong with the assumptions with which we have approached the problem of hospitalized dying in late twentieth-century America?
These questions deserve both wide and careful discussion. This supplement aims at that end by bringing together a group of commentators from several areas--clinical medicine, law, education, interpretive social sciences, research methodology, and philosophy--to consider the lessons of this study. In the remainder of this introductory essay, we provide a summary of the project's activities and results as they were reported in "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients," published in JAMA (22 November 1995).
Phase 1: Examining Hospital Death
During the study's first two years, researchers were most concerned with correcting data to describe how hospitals actually care for very ill patients at a high risk of dying. This required more than recording the various procedures and services provided to the seriously ill. In light of prevailing views that good medicine near the end of life depends on honoring patient values and preferences, it was important to detail how treatment choices actually were made. The information amassed had to describe the extent to which providers in fact involved patients and families in developing medical strategies.
To qualify for the study, a patient had to be an adult with an illness so severe that he or she had roughly a 50 percent chance of dying within six months. …