Science, care, and autonomy

I was at an appointment last week with Dr. Victor B. Kintanar, of the Makati Medical Center, who has been my doctor for close to 30 years.

We’ve recently taken to discussing ethics: in my case, as they apply to social sciences research; in his case, as he knows it most intimately in his specialization, where he is tasked with the welfare of a mother and her unborn child.

He reminded me not to be afraid to ask my doctors questions and discuss treatment options. “The age of paternalistic medicine is long gone,” he said.

That is, the doctor’s role is not that of dictating choices to a compliant patient. Both patient and doctor must share in decision-making, hence the principle of informed consent. There must be space for consultations, even if they have to run over several sessions.I draw upon my knowledge and habits as both a bench and social scientist whenever I’m in consults with my doctors. I have long been an advocate for my health, but I can predict that many patients, or even doctors, will respond with horror to the notion of questions and discussions.

To ask questions, it appears, is to question one’s doctor—and in general, this seems anathema to a culture that interprets seeking out information as offensive and arrogant.

I am interested in critiques of paternalistic models of medicine and their parallels to those in science communication. I am also slated to give a lecture on sharing medical research with another hospital, and weaving both fields will entail questioning the assumptions that underlie what we believe to be standard practice.

Paternalistic models of medicine assume that a physician’s expertise also lends the physician power to act in any way they believe will benefit the patient—even if it means withholding information or making decisions for a patient without the patient knowing. In such models, a patient is assumed to always be ignorant of both scientific information and what is best for their bodies.

It must be argued, however, that a physician cannot truly know what is beneficial for a patient if they do not know the patient’s full context. This context can be derived only from deep discussions on the patient’s needs; often, it is this discussion that calms a patient while allowing a physician insight into the patient’s life.

Ezekiel and Linda Emanuel, in the 1992 Journal of the American Medical Association (JAMA), explored models of the patient-physician relationship, which differ based on the assumptions doctors make about their patients’ ability to make decisions. Paternalistic models work for incapacitated patients; but for lucid patients, shared decision-making is best.

Shared decision-making recognizes patient autonomy or their free will to decide what to do based on full knowledge of their condition, prognosis, and treatment options. This model also acknowledges a patient’s store of knowledge. As Madison Kilbride and Steven Joffe discuss in their 2018 JAMA article, patients already have access to information, both legitimate and suspect. Physicians, therefore, have to guide patients through the flood of information, rather than dismiss patients for seeking information out.

This parallels models of science communication that acknowledge the unique contexts and knowledge of our diverse public. Information-seeking is healthy and can lead to critical thinking. We, therefore, avoid bombarding people with more data and instead encourage discussions among people of different brands and levels of expertise, and with the aim of mutual understanding.

Paternalistic models, in contrast, push people to simply trust science and the experts. The term “trust” is both overused and abused, and is assumed to result in obedience. Research, including mine, shows the opposite.

For example, people trust our weather bureau for the science that goes into storm warnings, but not everyone will obey the call to evacuate.

The weather bureau doesn’t live where we live, a participant once told me, when I asked why they didn’t follow evacuation orders.

They knew their context and could discern when it was best to leave. Surrendering to science without a thought (or to a physician without question) could be dangerous.

In both medicine and communication, there is no bid to impose a single model of provider-audience. The role of the doctor or communicator will differ depending on the case; but discussion is needed to determine context, to share an understanding of what is truly beneficial for the long term.

These days, we often equate autonomy with giving people information and then expecting them to intuitively know how to use it, with running free absent responsibility.

Independence Day is not a day of such recklessness. It is a day to realize that true autonomy happens when we acknowledge our shared history and many cultures when we take control of our lives and engage in citizenship—when we listen and try to understand each other, rather than seek to manipulate each other into false unity and intellectual surrender.

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iponcedeleon@ateneo.edu