Families' roles in advance directives.

In general, a presumption in favor of families for surrogate decisionmaking exists in law and in some ethical argument. Although alternative marriages, alternative lifestyles, and changes in the meaning of nuclear family necessitate a contextual understanding of the term that includes partners and friends, it is relatively easy to marshal conventional theoretical arguments for the presumptive authority of family surrogates. Among them, families are likely the most concerned about the patient's welfare. Second, families are often the best source of information about a patient's values and preferences. Third and most important, the family unit is the primary social unit in our society and provides the interdependencies from which personal freedoms and autonomies develop. What is less recognized is the extent to which the use of family surrogates constitutes a preference among diverse groups of patients, which could be used as a primary justification for family decisionmaking. Empirical information about surrogate preferences can not only teach us about those preferences but provide insight into potential "uptake" and regard for any ethical prescription or public policy proposed or enacted as well. Ethical prescriptions and policy formulations are not of much use if ordinary citizens neither accept nor follow them. Thus it is important to know directly from U.S. citizens themselves why advance directives are not widely used. What People Say They Want A series of studies about advance directives and the elderly was begun in 1986 at the University of Kentucky Sanders-Brown Center on Aging. In the first in-depth study, after a discussion of their medical histories and possible involvement in surrogate decisionmaking, forty elderly participants were asked, "Is there someone who knows you well enough that you would trust him or her to make health care decisions on your behalf in the event you could not make them for yourself?" Later in the same interview the participants were asked, "If you were too sick to make an important decision about your health care, who would you want to make the final decision for you?" To both questions all but two of the participants who had family (38) indicated preferences for family members.[1] A hierarchical pattern was present: spouse, adult children, siblings, and other family. A subsequent in-depth interview study inquired about prospective surrogates for elderly persons without families. Although one-fourth of the participants felt they had no one they could rely on, the majority expressed preferences for friends and physicians.[2] Another study involved hospitalized elderly patients. Ninety-five percent of those with families mainly preferred their spouses and adult children.[3] Larger statewide surveys of adults of all ages produced similar results.[4] The first of these studies showed 91 percent of those surveyed preferred family surrogates, while in the second study this figure rose to 94 percent. Not surprisingly, persons aged eighteen to thirty predominantly preferred spouse or parents; persons thirty-one to sixty-five predominantly preferred spouse or adult children; and persons over sixty-five preferred adult children or spouse. An intervention study discovered that many elderly people were not completing advance directives because they were confident that they could rely on others to make any necessary decisions for them, including trusting family to handle such tasks." Six different intervention strategies were employed to increase use of advance directives. Four months later the participants and controls were interviewed to discover what they had or had not done. The survey inquired, among other things, about their surrogate preferences. The participants were asked to name any and all possible candidates. Overall, 61 percent identified adult child(ren), followed by spouse at 29 percent. Of those who were married, 84 percent chose their spouse. …