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Advance directives improve patient satisfaction but do not ensure compliance with end-of-life treatment wishes

The purpose of advance directives (ADs) is to ensure that doctors and family members know a patient's end-of-life treatment decisions in the event the patient becomes incapacitated and unable to articulate his or her wishes. Although ADs are reassuring to patients who write them, they do not ensure that a patient's end-of-life wishes will be followed, according to three recent studies supported by the Agency for Healthcare Research and Quality.

The first study (AHRQ grant HS07632) found that discussions about ADs improved the care satisfaction of elderly patients with chronic illnesses. Unfortunately, these "instructional" ADs often did not prompt family members to make decisions that accurately reflected the patients' wishes at the end of life, according to a second study (AHRQ grant HS08180). On the other hand, ADs did prompt emergency and critical care physicians, but not patients' primary care doctors, to make more accurate end-of-life treatment decisions, according to a third study (AHRQ grant HS08180). The three studies are summarized here.

Tierney, W.M., Dexter, P.R., Gramelspacher, G.P., and others (2001, January). "The effect of discussions about advance directives on patients' satisfaction with primary care." Journal of General Internal Medicine 16, pp. 32-40.

Barriers ranging from time constraints and communication difficulties to physicians' anxiety about patients' reactions constrain doctor-patient communication about advance directives. However, these researchers found that patients want to have such discussions. Elderly patients with chronic illnesses who discussed ADs with their doctors were more satisfied with their primary care physicians (PCPs) and outpatient visits than those who had no AD discussions. This was after adjustment for other doctor, patient, and medical visit factors that influence care satisfaction. Doctors should initiate AD discussions and overcome communication barriers that might lead to patient dissatisfaction, suggest the researchers.

They studied 686 elderly patients involved in a randomized, controlled trial of computer reminders to increase discussions of end-of-life care and advance directives among clinicians and patients. This study was performed in a general internal medicine practice where 87 PCPs either did or did not receive computer reminders to discuss ADs with their elderly, chronically ill patients. The investigators assessed patient satisfaction with their PCP and medical visits via patient interviews held in the waiting room after completed visits. The strongest predictor of satisfaction with the primary care visit was ever having previously discussed ADs with their current PCP. The percentage of patients scoring a visit as "excellent" increased from 34 percent for visits without AD discussions to 51 percent for visits with such discussions.

Ditto, P.H., Danks, J.H., Smucker, W.D., and others (2001, February). "Advance directives as acts of communication." Archives of Internal Medicine 161, pp. 421-430.

ADs do not ensure that family members will make end-of-life treatment decisions that accurately reflect patients' wishes as outlined in their ADs, according to the results of this study. The researchers randomized 401 elderly outpatients and their self-designated surrogate decisionmakers (62 percent spouses, 29 percent children) to one of five experimental conditions. In the control group, family members predicted patients' preferences for four life-sustaining medical treatments in nine illness scenarios without the benefit of a patient-completed AD. The researchers compared the accuracy of family surrogate predictions of patient treatment preferences in this group with that in four intervention groups in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patients and either discussing or not discussing the contents of the AD with them.

In the scenario-based AD, patients indicated their preferences about life-sustaining treatments in each of several medical scenarios. These ranged from extremes such as coma with no chance of recovery and terminal cancer with pain to current state of health. In the value-based AD, patients generated a list of activities they believed to be so important to their well-being that they would not want to live if they were no longer able to engage in them. Despite confidence of patients and family members that they could accurately carry out the patients' wishes, family members without the benefit of an AD inaccurately predicted patients' desires to receive life-sustaining treatment in about 3 of every 10 decisions.

In other words, family members' predictions of what the patient would want were correct less than 70 percent of the time. Family members were two to three times as likely to make errors of overtreatment as undertreatment—that is, okaying life-sustaining treatment the patient wouldn't have wanted in that circumstance. Surprisingly, none of the AD interventions, including discussion of written ADs, improved the accuracy of the family members' medical decisions in any illness scenario or for any medical treatment. These findings clearly challenge current policy and law advocating ADs as a way to honor specific patient wishes at the end of life.

Coppola, K.M., Ditto, P.H., Danks, J.H., and Smucker, W.D. (2001, February). "Accuracy of primary care and hospital-based physicians' prediction of elderly outpatients' treatment preferences with and without advance directives." Archives of Internal Medicine 161, pp. 431-440.

Advance directives do not improve the likelihood that end-of-life-treatment decisions by primary care providers will accurately reflect the wishes of their elderly patients. However, ADs apparently do increase the accuracy of treatment decisions by hospital-based physicians, according to this study. The researchers compared the accuracy with which primary care doctors and emergency/critical care doctors predicted patients' treatment preferences in nine hypothetical illness scenarios. The physicians made substituted judgments after being provided with no patient AD, a patient's value-based AD (decisions based on whether the patient could still do certain valued activities), or a patient's scenario-based AD (circumstances in which death was preferable—for example, coma with no hope of recovery).

For PCPs, neither type of AD improved the accuracy of substituted judgments over not having the patient's AD. However, when hospital-based physicians had a scenario-based AD, they improved the accuracy of their decisions over no AD and made fewer overtreatment errors (opting for life-sustaining treatments the patient did not want). Without the use of ADs, these doctors were more likely to overtreat perhaps presuming that in an emergency, everything should be done to preserve life.

Given these findings, ADs should be available and easily accessible in an emergency situation and, when clinically appropriate, should be reviewed by hospital-based doctors providing care to acutely ill patients. Indeed, as primary care physicians delegate their care of seriously ill patients to hospital-based physicians, more decisions about initiation of life-sustaining treatments will be made by doctors who do not know the patient, explain the researchers.

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