CHICAGO-"I'd like to remind this assembly of something Roger C. Bone, MD, liked to stress-the importance of not abandoning the patient," said Peter Terry, MD, a professor of medicine at the Johns Hopkins University Medical Institutions, Baltimore. "Dr. Bone urged physicians to remember their duty to be advocates for patients-especially at the end of life, when physicians have a crucial role to play."

But how far should physicians pursue this duty of patient advocacy, and may such advocacy come into conflict with patient autonomy? In a lecture given at the annual meeting of the American College of Chest Physicians (ACCP) in Chicago, Dr. Terry said: "The notion that patients should make their own decisions regarding care-or termination of care-arose as part of the whole autonomy movement of the 1960s. Physicians were forced to abandon the paternalistic notion that only they should determine how their patients should be cared for. Instead came the obligation to respect patients' rights. Part of that respect entailed, or was believed to entail, the right of autonomous decision-making."

Patient participation in all decisions regarding treatment and care is undoubtedly progressive, Dr. Terry noted. Nevertheless, "I think the first thing that the physician should do is not ask patients what decision they want to make, for that presumes the desire for autonomy," he said. "I think what we as physicians first need to ask patients is: whom do they want to make decisions? Themselves? Family members? Their physicians? If the patient does want someone else to make decisions on his or her behalf, I think we as physicians should encourage and assist that patient-and do all that we can to assist that decision maker."

ADVANCE DIRECTIVES

Dr. Terry also explored the mechanism of decision-making. How are decisions made-especially when the patient is no longer competent to make his own, or even to delegate decision-making authority? One method is the "advance directive," a written document specifying a series of patient preferences regarding "what ifs": What if I become permanently comatose? What if I can no longer survive unless on life support?

"I wanted to know about stability of patient preferences," Dr. Terry said, "since preferences are notoriously subject to the passage of time and to changing circumstances. But there are data showing that stability of preference can remain as high as 80%, even when patients are queried at much later dates about what they would want at the end of their lives. Preferences tend to remain unchanged for as long as 2 years after they first were made, and even after the patient has experienced an acute health status change."

Clearly, Dr. Terry observed, advance directives could provide useful guidelines for decisions affecting terminally ill patients. Unfortunately, advance directives are uncommon. Studies have shown that only 10% to 25% of patients entering an acute care setting have outlined even the most rudimentary advance directive.

What is much worse than the lack of advance directives is the fact that even when such directives exist, they tend not to be followed. "In one study of 4,804 geriatric patients, 688 of them (14.3%) had some form of advance directive," said Dr. Terry. "But the majority were so vague as to be virtually meaningless. Only 90 were felt to be specific enough to be testable, in the sense that the patient could be followed to determine whether or not the advance directive had been adhered to. Of those 90, 22 patients' end-of-life situations were putatively governed by the advance directive. But the directives were followed in only nine cases. Not a very encouraging figure."

SURROGATE DECISION-MAKERS

If advance directives are absent, inadequate, or disregarded-and if the patient can no longer be consulted-then decision-making authority reverts by default to surrogates. Most often, surrogate decision-makers are the patient's family and/or physician. "So the question now becomes how accurately do surrogate preferences match those of the patients," Dr. Terry remarked. He summarized the findings of a study wherein 300 patients, 250 of whom were terminally ill, were asked to imagine three scenarios: 1) you are terminally ill, unconscious, and feeling no pain, but with no hope of awakening; 2) you are in a coma and feeling no pain-however, with aggressive treatment a small chance exists that you will awaken, but most likely to a mute and largely vegetative state; 3) you are in the terminal stages of Alzheimer's disease-unable to speak, understand, or recognize loved ones, but feeling no pain.

"Each of those scenarios came accompanied by a series of 'what-if' questions," Dr. Terry explained. "For example, the patients were asked: if you stopped breathing, would you want to be resuscitated? The questions were applied to all three scenarios." A slightly different set of questions was put to the families and physicians: eg, If the patient were in the condition described in scenario A and suddenly stopped breathing, do you think he or she would want to be resuscitated?

"The best match-up between patient preferences and families' intuition of those preferences occurred with the first scenario," said Dr. Terry, "which shows a 70% to 80% accuracy of prediction. When we look at the other scenarios, however, the surrogates' ability to predict successfully drops to 65% or less, which is certainly not the ideal. And physicians, not unexpectedly, are even less accurate than family members at predicting what patients would want at the end of life."

THE FUTILITY OF HEROICS

The importance of clear advance directives becomes glaringly obvious. In their absence, surrogates and physicians have to do divination; often, their respective predictions are at odds both with the patient's own preference and with each other's best judgment as to what should happen next.

"There are studies that show families tend to favor more aggressive treatment-more aggressive than the patient would have selected and, often, much more aggressive than the physician would recommend," Dr. Terry explained. Here, the notion of futility comes into play-a notion embodied in many hospital and CCU guidelines and even in the laws of some states, Dr. Terry observed. "Families are demanding that the most aggressive, heroic measures be undertaken, while the physician is pointing out that such measures may be futile, that they will produce no benefit," he said. "So what can we conclude? What should we do? Well, we might ponder a remark Dr. Bone made toward the end of his life, at a time when he was thinking and writing about these issues most profoundly: 'Finally, I believe,' Dr. Bone said, 'that clinicians must learn to discuss issues of life and death. We have become so involved with the scientific part of medicine that we may unconsciously ignore the dying part of living.'

"All this is difficult," Dr. Terry concluded, "but it is part, I think, of what we should mean when we speak of practicing ethics in the CCU."

-Robert McCarthy

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