The word that set off my reflections was ‘autonomy.’ Today, virtually every medical student, intern, resident and practicing physician is familiar with the word ‘autonomy’ as it is ascribed to the patient in the physician-patient relationship.
‘Autonomy’ came into use as the field of bioethics emerged, promoting the rights of patients as full participants in decision making about their medical treatment. “Respect for autonomy” was enshrined as an ethical principle, meant to counter the centuries-old paternalism under which physicians unilaterally made decisions on behalf of patients. This elevated principle demanded that patients be provided all information on their conditions, prognoses and treatment options. Gone were the days when a patient wasn’t told she had incurable cancer or was assured that “everything would be all right” when her doctor knew it wouldn’t.
In bioethics, as in other fields, terms change and meanings evolve. But when it comes to ‘autonomy,’ critics are grafting negative connotations onto a word that encapsulates a historic and positive shift in doctor-patient relations.
Some critics of the newly empowered patient contended—mistakenly—that respect for autonomy required physicians to refrain from making any recommendations to patients. In this view, doctors must simply give their patients a menu of options, leaving patients to choose from column A or column B.
Another mistaken position was that autonomy demanded that patients be viewed as isolated individuals, separated from family or friends whose help they might welcome when they have to make critical healthcare decisions.
Both of these views offered an impractical and unrealistic application of ‘autonomy,’ one that doesn’t reflect the way people behave in the real world. Patients should be supported in their decision-making processes, however they choose to go about them, and physicians’ roles should include helping their patients make truly informed decisions.
But more recently, the critique of autonomy has leapt into health-policy debates. Some bioethicists—“autonomy bashers,” as they are called—claim that respect for autonomy is responsible for runaway healthcare costs. This is a new distortion, one that claims that ‘autonomy’ implies “the right to demand anything and everything” from the healthcare system. In this view, if a patient requests a CT scan, even if the physician believes it to be unwarranted, the patient’s right to autonomy means that the patient should get the scan, no questions asked.
Autonomy, these critics allege, is the main factor contributing to the exponential rise in healthcare costs. But critics could arrive at this conclusion only by warping the word’s original meaning.
When one prominent bioethicist at the Columbia conference referred to himself with pride as an “autonomy basher,” I confronted him. (The speaker has been working in the field of bioethics a few years more than I have—in my case, forty-some years.) “Look,” I reminded him, “autonomy was introduced to counter paternalism, the physicians’ practice of deciding for patients.” The speaker concurred with my historical observation. Whether he will continue to use the term in this way is another matter.
Health policy in the United States is fraught with ethical controversy. Partisan debates surround governmental obligations to the uninsured, the desirability of a single-payer system, the behavior of doctors who refuse Medicaid patients, the very notion of rationing healthcare and more. What has received little attention is how linguistic choices affect the debate.
This conference reminded me that when it comes to healthcare, academics as well as politicians can distort the meaning of an ordinary word to signify something different from its original sense. Because it represents a progressive and historic change in doctor-patient relations, ‘autonomy’ should not be twisted to serve the arguments of those critical of today’s healthcare practices.