Fully Uninformed Consent
Sometimes, a fine line distinguishes the under-informed from the over-informed patient. The delicate question is, "Who decides where the line is drawn?” About twenty years ago, I worked for a doctor who insisted his staff remove all the packaged inserts from drug samples. He considered it "over-information." Current trends toward respect for patient autonomy demand a less paternalistic approach, but just recently when I questioned my own doctor about a prescription, his response was, "Gone are the good old days when patients just took what you gave them."
The following case for analysis questions the centrality of the fully informed consent to medical ethics and raises potential conflicts between "therapeutic privilege” and "respect for patient autonomy.”
Mary, who is confined to a wheelchair, has no living relatives and no friends. She is a very lonely 19-year old woman. She seems to have no interests in life except taking care of her long red hair. She has been diagnosed as having metastatic ovarian cancer. If it does not respond to treatment almost immediately, it is fatal and the patient dies within months. The treatment leaves a person very weak for a long time and causes hair loss. The physician tells Mary the diagnosis and prognosis but tells her nothing about the hair loss, lest she decide to refuse treatment. Is therapeutic privilege properly and ethically invoked in this case?1
Twenty years ago, most of us would have sided with Mary’s doctor and his use of therapeutic privilege in this case. Only recently, patient autonomy has been acknowledged and respected as an important part of health care, contributing to the patient's ability to make informed decisions, increasing his or her involvement in the treatment, and enhancing patient dignity. Exceptions to this may include emergency situations, a patient's lack of consciousness or competency, level of education, or respect for cultural variations in the decision-making process. For example, on the Leech Lake Indian Reservation in northern Minnesota, some of my patients did not want to know the risks or potential complications of a procedure, believing that the mere knowledge of a negative outcome can make it happen.
Physicians may withhold information when they believe that full disclosure will have an adverse effect on the patient’s physical or emotional health. According to Garrett et al, three conditions must be met for therapeutic privilege: 1) The use of this privilege must be based on a specific patient’s situation (e.g., Even if it is determined that concealing hair loss from Mary is ethical, one cannot say it is ethical to conceal knowledge about hair loss from all patients receiving chemotherapy). 2) The physician must be certain that full disclosure will have a significantly adverse effect on the patient (e.g., The physician knows Mary would become hysterical at the thought of losing her hair). 3) Discretion should be used in the manner and extent of disclosure (e.g., Mary’s physician should not conceal all information relevant to her diagnosis, prognosis, other side effects or therapeutic options for treatment).1
Written in the 1800s, the AMA’s first code of medical ethics stressed a paternalistic approach to patient care, believing that a patient’s right to the truth was not as important as the doctor’s obligation to beneficence. Recently, due to increasing emphasis on respect for patient autonomy, the AMA advised physicians to refrain from the use of therapeutic privilege, cautioning that if information needs to be withheld from a patient, it should be withheld on a temporary basis only.2 Unfortunately, this means that Mary will probably have to wait to find out about hair loss from the nurse who is assigned to prepping her at the hospital.
Perhaps, the question of when, where, and how to provide informed consent is as important as what information is provided. The "event model” is the most common approach used to deliver informed consent – which means that risks, benefits, and options are provided when treatment is administered. Although the "event model” may meet legal requirements and avoid the appearances of paternalism, anyone can certainly see how little effort is actually made to invite the patient into the decision-making process. The "process model” of informed consent stresses the importance of dialog throughout all aspects of clinical care. Unlike the "event model,” which obtains a decision from the patient at a single point in time, the "process model” recognizes the roles played by all healthcare professionals over the entire course of care - all aimed at fostering patient participation.
There is no formula for invoking therapeutic privilege or truth telling; informed consent depends on how, when, and in what manner the truth should be told. The old model of the paternalistic doctor who kept patients in the dark was based on a history of medicine as magic and the unwritten law of every magician to never share the secret to a trick. The original version of the Hippocratic oath reflects the duty of a physician to "keep secret” and "impart knowledge of this art only to my own sons, and to my teacher’s sons, and to disciples bound by oath to the medical laws, and no others.” But, the original version of the Hippocratic Oath also emphasizes beneficence and nonmaleficence – key ethical principles that applied to the very limited scope of medicine that was practiced way back in the late 5th century, BC.
But today, with the emphasis on the business of healthcare, paternalism can conflict with patient autonomy for varied and complex reasons: economics, for example. Time is money, so patient relationships are prim. We have all witnessed how the ego of a condescending healthcare provider can disregard the autonomy of patients and staff alike. John Banja claims that the same medical egoism that demands therapeutic privileges is responsible for concealing medical errors.3 "What patients don’t know can’t hurt them” – right? Sadly, in cases of medical error, what patients don’t know can hurt them.
Contemporary health providers are supposed to follow a model of care that is based on respect for patient autonomy - the right of patients to make decisions about their own care; and, in order to make fully informed decisions, patients need to have information. Based on Mary’s fixation with her hair, her specific case suggests a "weak" form of paternalism may be justified; however, it is important that the doctor request outside consultation (social, psych, wigmaker) to make sure information is presented in the best way possible.
Farrah Faucet was a famous actress who tried every therapeutic option to prevent hair loss in her battle against cancer. Farrah’s doctor stated that he was well aware of her concern about hair loss and that they worked together to find viable options.4 Later, as her options decreased, they both agreed to try chemotherapeutic agents that would result in hair loss. The right of the patient to refuse is respected by the practitioner of "weak” paternalism. When I think weak paternalism, I think of Marcus Welby, MD: the TV doctor who did everything from house calls to marriage counseling. He was the kind of humanistic doctor we would want caring for our children or our grandparents, but not necessarily for ourselves or Mary, for that matter.
- . Garrett, TM, Ballie, HW, McGeehan, JF, et al. Health care ethics: Principles and problems (5th ed.). Upper Saddle River, NJ: Prentice Hall; 2010.
- AMA. Opinion 9.082: Withholding information from patients. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opionion8082.page. Published 2006. Accessed March 30,2012.
- Banja, J. Medical errors and medical narcissism. Sudbury, MA: Jones and Bartlett; 2005.
- Stewart, A. My journey with Farrah. NY, NY: Harper Collins; 2009.
Holub P. Fully Uninformed Consent. The Internet Journal of Allied Health Sciences and Practice. 2012 Apr 01;10(2), Article 4.