In the NEJM, Lisa Rosenbaum looks at communication between doctors and patients and, as she has before, suggests that real clinical practice is more complex than orthodox bioethics makes it out to be. Discussing cases, including her own, she asks
Might there, in fact, be such a thing in medicine as Too Much Information?
a view which she attributes to our received understanding of informed consent.
Instead, Rosenbaum argues for a kind of paternalism, in which patients rest in a cognitive and emotional dependence on physicians. She’s getting something right, but it’s critical to get clear on what kind of paternalism we might accept.
Let’s start with informed consent to treatment. Roughly, we have informed consent to medical treatment when a competent patient a) gets full disclosures about the treatment, b) understands these disclosures, and c) voluntarily consents to treatment. These requirements are motivated by a commitment to respect and promote the autonomy of patients. Rosenbaum suggests that this doctrine implies that the ideal patient would be making all his decisions jointly with his doctor, and the physician would be sharing all her information with her patient so that the latter’s choices would be fully informed.
The informed consent doctrine, however, is not a complete model of doctor-patient relationships. I come to physicians for expert care, not a medical education. And I come to my doctor not only because she knows more than I know, but also because even if I knew what she knows, I might not trust myself to be the best judge of my situation when I am debilitated or in intense pain. If she sees that I am not ready to hear the bad news I’m OK with her waiting until I am in a better place.
Moreover, I am looking not just for her cool appraisal, but also for the emotional experience of her firm commitment to my well-being. In the classic words of Francis Peabody,
in man… disease at once affects and is affected by what we call the emotional life. Thus, the physician who attempts to take care of a patient while he neglects this factor is as unscientific as the investigator who neglects to control all the conditions that may affect his experiment… Time, sympathy and understanding must be lavishly dispensed… One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.
The commitment of the doctor and the faith of the patient in that commitment are constitutive of, and not ancillary to, the doctor-patient relationship. Rosenbaum captures this in a discussion of Franz Ingelfiner, a former editor of the NEJM:
Ingelfinger describes his experience as a patient with adenocarcinoma… [a disease] he’d studied for much of his career. As he considered the trade-offs of chemotherapy and radiation, receiving contradictory expert opinions, he and his physician family members became “increasingly confused and emotionally distraught.” Finally, one physician friend told him, “‘What you need is a doctor.’” Ingelfinger notes, “He was telling me to forget the information . . . and to seek instead a person who would . . . in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief.”
So I agree with Rosenbaum: we sometimes are, and should be, in a state of cognitive and emotional dependence on our medical caregivers. That is, patients both want and benefit from a kind of medical paternalism.
So can we square this with informed consent and a concern with patient autonomy? First, let’s be clear that there are at least two kinds of paternalism. There is a hard paternalism, where superior and subordinate interpersonal roles are defined in ways that give all the agency to the superior. The traditional norms of doctor-patient relationships embodied this paternalism. The doctor is the authority; the patient does what he’s told. It is illuminating to read the first AMA Code of Ethics. It’s about the patient’s duties to the doctor, not what she owes the patient.
The informed consent revolution overthrew hard paternalism. We now see that the patient is the agent in the doctor-patient relationship. My autonomy is not infringed if I delegate some of my choices to someone who works for me, has a better view of the facts, and whom I trust to make choices that serve my best interests.
Importantly — and here I wish Rosenbaum had been clearer — I’m not asking the doctor to protect me from the truth. I count on my physician to force me to face upsetting facts, when that’s needed. Similarly, I expect her to ask me questions to clarify what I want and to press me for a choice when that’s needed, because sometimes I am the best judge of my own interests.
For example, a friend gets migraines once a month, but this ceased when she started hormone replacement therapy. She’s now finding it difficult to get a prescription, because the medical profession has become convinced that the risks of HRT are greater than the benefits. But isn’t she the best judge of whether these risks are worth the escape from monthly disabling pain?
So what Rosenbaum’s argument supports is a soft paternalism. Most of the time good physicians spare us irrelevant details, sometimes they press through our denial. This can’t be reduced to a rule, but no one ever said that doctoring was easy. The key thing is the context: it’s not the doctor’s expert authority that matters; it’s our interests as patients that matter.