As I explained our proposed course of treatment for his cancer, my patient, who we will call J, simply nodded, not saying a single word. When I paused, multiple times, to ask whether he had any questions, he repeatedly said "no." And when I asked him what I thought about the proposed treatment plan after I had finished explaining it, he said "Whatever you think. You're the doctor."
While he was, strictly speaking, correct, I was surprised. J had a high-functioning job that required an extraordinary degree of cognitive flexibility. But after our conversation, I was not so sure whether he had truly understood his overall prognosis. J was sick, hounded by a variety of chronic conditions that had slowly eaten away at his quality of life. Our treatment, which stood a reasonable chance of controlling his cancer, would not address all of his other medical problems. So while I supported giving him treatment, I also understood that J would not be unreasonable if he chose to pursue another course of care that focused primarily on his comfort. I had tried to explain this option to him, but he did not seem interested in having the discussion. "Just tell me what to do," he said. "All of this is a lot to process."
My conversation with J brought the concept of informed consent to my mind. According to the American Medical Association's Code of Medical Ethics, "the process of informed consent occurs when communication between a patient and physician results in the patient's authorization or agreement to undergo a specific medical intervention." It goes on to say that, in non-emergency situations, physicians should present a patient with his or her diagnosis, possible treatment options, and the possible risks and benefits associated with each option; assess the patient's ability to understand medical information pertinent to his or her case, and the implications of accepting or forgoing treatment; and document evidence of informed consent in the medical chart.
As an intern, I learned that it was this third aspect of informed consent—the need to document evidence of it in the medical chart—that tended to be the focus of these conversations with inpatients. With so many demands on inpatient providers' time, informed consent discussions, as important as they are, are often seen as just another task to complete. While I found that inpatient providers would still try their best to assess their patients' understanding and provide treatment alternatives, the need to complete so many other tasks meant that they often spent less than five minutes having these important discussions. Perhaps as a result, patients frequently decide to undergo the treatments or imaging studies being proposed.
A year later, in an outpatient specialty where informed consent is crucial, I have found that my conversations with patients on this topic have been substantially richer. I have felt more comfortable exploring proposed courses of treatments with them, understanding their motivations for seeking care, and learning about their ultimate goals for their medical care. Part of this has undoubtedly been related to the fact that I have grown as a doctor, and part of this is related to the fact that I am no longer under the same time constraints as I was as an intern. But now that I have the time to more fully explore these issues with patients, another concern has arisen in my mind.
Medical care has unquestionably become more complex in the past few decades. While this increasing complexity has undoubtedly yielded many benefits, like improved patient outcomes, it also has created unique challenges. Even in the internet age, where medical information can be accessed from anywhere, I have found that patients often struggle to understand their diseases, their prognoses, and treatment alternatives, even after multiple thorough discussions with a variety of skilled providers. As my conversation with J showed, even high-functioning individuals who have access to unlimited resources can struggle with deciding how to pursue treatment for difficult medical problems, like cancer, in the context of their other medical problems. Sometimes, the difference in experience and knowledge between patients and physicians is too great. At other times, the burden of a new life-threatening diagnosis can simply be overwhelming to patients.
All of this begs the question: is true informed consent really ever possible? For relatively simple medical conditions (like simple urinary tract infections) that have readily available, curative treatments, and imaging studies with clear indications, the answer is probably "yes." As long as the purpose and goal for the study or treatment are clear, true informed consent seems like it is within grasp. However, in more complex cases, such as when patients have severe heart failure or advanced cancer, I am not sure true informed consent is always obtainable. In these cases, in which patients struggle to comprehend complex treatment algorithms, the values and goals of providers become paramount in deciding how to proceed.
This may not always be an issue since often the goals of patients and their providers are aligned. But this is not always the case. For example, a patient may truly prefer comfort care, but may be offered more aggressive care instead, and a gulf of incomprehension between the patient and provider may push him or her to pursue care that is in opposition to his or her wishes. It is in these cases, in particular, where our shortcomings, as a profession, in obtaining true informed consent are most vividly illustrated.
This problem is extraordinarily complex, and I do not know how to fix it. But I think that all physicians, as a first step, need to do a better job understanding our patients' ultimate goals for their care. Only then can we offer them treatment options aligned with their values. They deserve no less from us.
Dr. Kunal Sindhu is a resident physician in New York City and a 2018-2019 Doximity Author. You can follow him on Twitter @sindhu_kunal.
