Soon after I finished my surgical training, I worked with a young doctor who was impressive not only for his clinical skills but also for his devotion to patients. He was large and powerfully built but never seemed to loom over his patients, miraculously shrinking down to their eye level whenever he spoke with them. He listened intently to every detail of their travails and always ended the visits by asking if they still had any unanswered questions.
One afternoon I was surprised to see him at a nursing station, his massive arms gesticulating as he complained to a nurse about one patient’s family. The patient was dying, and the young doctor had organized a meeting with the family to talk about withdrawing life-support machines and medications and starting comfort measures. The family had spent the entire meeting asking questions but then refused to make any decisions or withdraw any treatments.
“I spent all this time telling them we could continue to inflict pain on their loved one or we could make him comfortable,” he said, his hands still moving. “I told them suffering or comfort — it was their decision. But in the end, they made no decision and just walked right out of the room.”
The way doctors and patients approach medical decisions has changed sharply over the last 50 years. For generations, these decisions were the exclusive purview of doctors; and patients, if they participated, often had little say in the final choice. But that paternalistic decision-making process began to change in the late 1960s and ’70s, as movements calling for patient empowerment grew and medical ethicists began articulating principles regarding the ethical care of patients.
One tenet that gained particular traction among clinicians was respect for the person. Applied to the work done in wards, clinics and operating rooms, this ethical principle led to a new clinical ideal: patient-centered care.
But a second ethical principle, one closely linked to the first, also played an increasingly important role in the patient-doctor relationship: the notion of respect for a person’s autonomy. With time, autonomy would mean letting patients make their own decisions; and that interpretation would work its way into the teaching programs of medical schools and into state laws that mandated discussion of treatment options with patients.
For the next 40 years, young doctors, myself included, would be trained to restrain ourselves from making anything but emergency or mundane decisions for patients.
But a new study reveals that too much physician restraint may not be all that good for the patient — and perhaps may even be unethical. While doctors might equate letting patients make their own decisions with respect, a large number of patients don’t see it that way. In fact, it appears that a majority of patients are being left to make decisions that they never wanted to in the first place.
Researchers interviewed more than 8,000 hospitalized patients at the University of Chicago. When it came to medical decisions, almost all the respondents wanted their doctors to offer choices and consider their opinions. But a majority of patients — two out of three — also preferred that their doctors make the final decisions regarding their medical care.
“The data says decisively that most patients don’t want to make these decisions on their own” said Dr. Farr A. Curlin, an associate professor of medicine at the University of Chicago and one of the authors of the study.
The challenges appear to arise not when the medical choices are obvious, but when the best option for a patient is uncertain. In these situations, when doctors pass the burden of decision-making to a patient or family, it can exacerbate an already stressful situation. “If a physician with all of his or her clinical experience is feeling that much uncertainty,” Dr. Curlin said, “imagine what kind of serious anxiety and confusion the patient and family may be feeling.”
Patients and their families also often don’t realize that their doctors may be grappling with their own set of worries. “Doctors may think, ‘Who am I to presume to know what my patients need?’” Dr. Curlin noted, and may be hesitant to assert their own opinions for fear that they might commit some kind of ethical transgression. Some will resort to veiling their own opinions in a halfhearted attempt to direct the decision. While the doctors might be convinced that they are being objective and dispassionate, more often than not they are sending mixed messages.
A doctor may, for example, tell relatives that it is their choice to withdraw life support from a dying patient. But that doctor may also use value-laden language to describe the options. One alternative may be described to the family as “reasonable” or “comforting,” while the other is depicted as “invasive,” “aggressive” or “painful.”
“This creates a kind of bizarre dishonesty in how we communicate,” Dr. Curlin said. “Patients end up feeling manipulated and will resist making any decision at all.”
For doctors, then, the key to preserving patient autonomy — and patient-centered care — lies not in letting patients make the final decisions alone but in respecting their opinions and shouldering the responsibility together. And while patients will need to be more explicit and ask for that help, doctors, like my young colleague and, I admit, myself, will need to be more mindful of whether patients want them to share information, be directive or hand over the responsibility of the decision.
“We have to stop drawing a circle around patients and their families,” Dr. Curlin said. “We have to stop subjecting them to the loneliness and burden of autonomy and instead begin standing in that circle with them.”
Dr. Kevin Brown was a prominent South L.A. physician with an impressive international resume that included being the son of the former premier of Bermuda.
