By Sophie Ludewigs, Jonas Narchi, Lukas Kiefer and Eva C. Winkler.
It is rare to return from a visit at the doctor’s office or a clinic and feel informed to a satisfactory degree. In many cases, one will either feel completely overwhelmed by the amount of medical information and the professional lingo used, or, on the other hand, left with lots of open questions about the procedure and its possible outcomes. To a certain degree, that is to be expected: Patients’ informational and decision-making preferences differ significantly. While some patients want to know even the smallest detail, others prefer to know as little as possible and would like to leave the medical decision in the (hopefully) capable hands of the physician. So why shouldn’t the informed consent process mirror these differing preferences? In our recent article, we argue that informed consent should be rethought in light of the individual patient’s preferences and the unique physician-patient relationship of trust. We call this fiduciary informed consent.
The physician-patient relationship has been considered fiduciary in nature ever since Beauchamps’ and Childress’ famous account of medical ethics. Yet, the fiduciary nature has never been grounded in an ethical foundation, thus making it difficult to derive normative consequences from it. Everyone agrees that the physician-patient relationship is fiduciary, but it remains unclear what exactly that means and why it is the case.
Drawing on the phenomenological accounts of mutual trust and obligation by Lévinas and Løgstrup, we have developed an ethical fiduciary theory and combined it with theories of informed consent. As a result, we propose an ethical fiduciary theory that allows physician and patient to jointly determine the physician’s role on a spectrum from, what we call, the “fiduciary as advisor” to “fiduciary as agent”. If the patient prefers an active role, the physician serves primarily as an advisor, providing the necessary information to enable the patient’s decision-making. If the patient desires a more reliant role, the physician becomes more of an agent, not only providing information, but also offering concrete suggestions.
Conceptualizing informed consent in a fiduciary framework, thus, simultaneously allows for a greater and lesser degree of delegation. Given this choice, the fiduciary concept empowers patients to decide for themselves to what extent they want to exercise their autonomous decision-making capacity and whether they want to delegate certain parts of the decision to the physician.
Simply put: The best way to make sure that a patient is sufficiently informed and gives an informed consent that actually deserves to be called “informed” and “consent” is to ask them how much they want to know about a treatment. Such personalized or, in our terminology, fiduciary informed consent is not merely an abstract theory. It changes the informed consent process profoundly.
First, we propose the introduction of a preliminary conversation where the patient’s values and preferences are assessed. The preliminary conversation is designed as a brief high-level discussion that first establishes the treatment relationship. It should convey the importance that personal preferences bear on medical decision-making and provide an opportunity for the patient to share such preferences and values with their physician.
In a second step, the consent interview and material must be adapted to the patient’s individual needs. To achieve this, the consent interview should distinguish between decisions about ends and means and highlight all value-laden decisions. Obviously, the patient must be informed about the ends of a treatment and possibly choose between different ends, such as quality of life vs. length of life. While such decisions are highly dependent on individual values, the employed means are often less value-dependent and can be delegated more easily. But as the example of blood transfusions illustrates, there can indeed be medical means that touch on a patient’s – in this case religious – values. The fiduciary theory honors the patient’s autonomy and thus forbids the delegation of any decision that is dependent on the patient’s values, even in cases where the patient prefers to know as little as necessary.
The reorganization of the consent interview should reflect how important information is and how much of it can(not) be left out. Similarly, the written consent material should be reorganized into three distinct sections, the first section containing basic information about ends; the second highlighting value-laden decisions about means and the third listing value-neutral decisions about means, stating information about their risks (beginning with the most common and severe risks).
These changes to the informed consent process guarantee that the extent to which patients are willing to entrust their responsibility to the physician remains their choice. They also open up the way to rethink other areas of medical ethics in light of the fiduciary nature of the physician-patient-relationship.
Authors: Sophie Ludewigs1, Jonas Narchi2, Lukas Kiefer2, Eva C. Winkler2
*Jonas Narchi and Sophie Ludewigs contributed equally to the manuscript as first authors.
1 Institute for German and European Corporate and Business Law, Faculty of Law, Heidelberg University, Heidelberg, Germany.
2 Section for Translational Medical Ethics, Department of Medical Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Heidelberg, Germany.
Competing interests: None
Social media accounts of post author(s): @EWinklerTME