Are we asking the right questions

Despite considerable progress in advance directives research, it is time to review the research critically and ask potentially uncomfortable questions. For example, What criteria do we use to decide which questions to research? Do we need to conduct more basic research about preference formulation and decisionmaking to ensure further progress? How should the research to date inform future projects? Much of the research pertaining to advance directives has not been very helpful in developing and promoting effective and clinically applicable advance care planning. Several problems may account for this: 1. The research methods often determine the research questions and limit their significance. 2. The research questions and the significance of the results are often constrained by the time frame (frequently geared to the convenience of a fellowship) and sampling of study participants. 3. The research often lacks the insights and sensitivity gained by having an interdisciplinary team of investigators. 4. The research often ignores the central questions about valid representation and communication of patient values, attitudes, and preferences into future circumstances of mental incapacity. 5. Competition for research monies and the logistical difficulties of maintaining effective communication among investigators in different parts of the country inhibit collaboration and efficient pursuit of an organized and orderly research agenda. Purpose of Advance Directives Advance directives were promoted initially to: (1) extend the right of self-determination in health care decisionmaking enjoyed by competent patients to people who become mentally incapacitated; (2) approximate the goal of shared and informed decisionmaking even when mentally incapacitated; and (3) help patients and proxy decisionmakers (speaking on behalf of mentally incapacitated patients) avoid unwanted and non-beneficial death-prolonging treatment or physical states considered to be without dignity.[1] To evaluate whether directives acccomplish these objectives is a natural area for "first-order" research. The primary outcomes for this basic research would focus on questions such as, Do instructional advance directives enable mentally incapacitated patients to receive or forgo treatment to the same degree as competent patients? Do proxy advance directives ensure proxy participation in decision-making to a degree that is comparable to that of competent patients? A full evaluation of these outcomes would require a critical examination of the "natural history" of preference formulation and communication, and ultimate decisionmaking. Important questions include@ Do advance care forms and discussions provide sufficient information for valid representation of preferences? Does the written record communicate meaningful preferences that are applicable to future clinical situations? and, Does availability of advance directives inhibit communication with patients before the onset of mental incapacity? These questions seem more germane than questions about the effects of advance directives on perceived satisfaction with care and health care costs, or clinicians, adherence to the preferences expressed in advance directives. There is also the need to ascertain whether the original objectives for advance directives match the desires of the individuals they were intended to benefit Many patients desire advance directives to ward off untoward outcomes of medical technology. With these individuals it may be desirable simply to elicit general goals of care under certain circumstances. Other patients may want to provide more detailed information, such as treatment preferences. Still others may find both of these alternatives to be too complicated, preferring to designate a proxy decisionmaker. One central question is whether the underlying structure of advance directives matches a particular patient's preferred method of representation. …