Structured Deliberation to Improve Decisionmaking for the Seriously Ill

The stated goal of the SUPPORT study was to improve decisionmaking for seriously ill hospitalized patients. The intervention, based on perspectives from participating physicians in Phase I of the study, provided prognostic information and communication assistance. But by all its outcome measures, the study's intervention had no effect. Was the goal unreasonable? Was the intervention the problem? Were the outcome measures wrong? Because of the magnitude of this study--both in expense and number of patients studied--by well-respected investigators, there is now a heavy responsibility to understand what happened. Acceptance of the study's findings at face value prompts the investigators' question, "Should we continue to try to improve the care of the seriously ill?" Along with the investigators, many fear that research in this very important area will falter, with clinicians and funding agencies believing that change is unrealistic, unwanted, or unstudiable, and researchers going so far back to the drawing board that existing progress will be delayed or ignored. Such responses would be regrettable. Justifying this position is the view that efforts to improve care at the end of life have moved to intervention before the problems and potential solutions were properly evaluated. SUPPORT is not the only case example; others include the Patient Self-Determination Act, which also moved to intervention before the wherewithal for its effective implementation was available, and the act's measured effects have been small. Alternative approaches, one of which I illustrate in some detail, should be considered. The SUPPORT Study The desire to improve decisionmaking for seriously ill patients is of unquestioned merit. To understand exactly what is in need of improvement and how to bring it about is less straightforward. One model for ideal care of the dying has been the hospice or palliative care model, to which the SUPPORT study seemed to aspire. The assumption behind the intervention appears to have been that help with communication and prognostication would result in more choices for palliative care. Four of the five outcome measures looked at criteria, such as being pain-free, staying out of the ICU, and reducing unconscious days before death, that are used to assess palliative care. However, as good as the palliative care model may be, it is not for everyone. Studies repeatedly indicate a wide range of preferences and values among patients and providers, including for aggressive care under circumstances of poor prognosis.[1] Insufficient opportunity to select palliative care may not be the key problem among hospitalized patients and physicians. Indeed, inability to stop undesired intervention does not appear from the available data to have been the problem for SUPPORT patients as a group since the proportion of patients who died with a DNR order in place (79%) was larger than the proportion who had stated a desire for no resuscitation (67%). So what are the problems in decisionmaking for the seriously ill? This is a question without a complete list of answers, although one problem is established: there is frequent mismatch between patient preferences (whatever they are) and judgments made on patients' behalf. Barriers to improving concordance therefore need to be defined, and strategies for overcoming them tested. Another emerging problem area is cultural insensitivity; others will probably include access to options and personal burdens of family care providers. Each emerging problem will require careful study, followed by assessment of barriers and testing of strategies. Even if the goal of SUPPORT had been well defined, the study would probably have fallen down on its intervention. The aim was to provide prognostic information to physicians, and to assist in communication about decisionmaking. The results of an instrument for assessing prognosis were provided to physicians as part of the intervention. …