Waiver of Informed Consent, Cultural Sensitivity, and the Problem of Unjust Families and Traditions
Hyun, Insoo, The Hastings Center Report
Caring for patients from different cultures presents a variety of challenges. One of the most complex centers on a worry that the formal requirements for obtaining informed consent may impose a Western ideal of personal autonomy on some minority patients, especially those who come from cultures that favor what appears to be a family-centered model of decisionmaking over a more individualistic mode. (1) Contrary to the current informed consent standards of full disclosure and patient self-determination, many minority patients may wish to remain uninvolved in the medical decisionmaking process, wanting instead to defer to their families' choices.
In one well-known study published in the Journal of the American Medical Association, for instance, researchers reported that elderly Korean Americans and Mexican Americans were less likely than elderly African Americans and European Americans to believe that a patient should be told of a terminal prognosis (35 percent and 48 percent versus 63 percent and 69 percent) and less likely to believe that the patient should make decisions about the use of life-support technology (28 percent and 41 percent versus 60 percent and 65 percent). Elderly Korean Americans (57 percent) and Mexican Americans (45 percent) were said to be more likely than the other two groups to believe that the family and not the patient should make end of life decisions. (2)
Cultural differences like these warn us of a potentially serious problem in the delivery of heath care today: namely, that providers who are unaware of such variable expectations may inadvertently transgress the cultural integrity and personal dignity of some of their minority patients through well-meaning efforts to obtain informed consent in the usual, patient-centered manner--contravening, in the process, the very principle of respect for persons that the doctrine of informed consent was meant to protect.
In response to this concern, some commentators have recommended that providers broaden their view of autonomy to accommodate the cultural values ethnically diverse patients might bring to medical decisionmaking, including a preference to waive their right to informed consent and relinquish decisionmaking authority to their families. Lawrence Gostin has suggested that the medical community can best preserve its overall commitment to personal autonomy by allowing patients to stray from a Western model of independent medical decisionmaking and act in the manner that best accords with their own cultural values) According to this view, providers can help advance this goal by first asking their minority patients which they would prefer: to be informed about their illnesses and involved in making treatment decisions, or to have their families handle these matters for them. (4)
This proposal seems consistent with the medical professions current norm of allowing variable degrees of patient involvement, as directed by the patient's values. That is, since a patient's right to self-determination includes both the right to decide whether to receive full information and the right to opt out of making treatment decisions altogether, most accept that physicians may be discharged of their duty to fulfill formal consent requirements at the request of their patients. (5) This idea appears to be modified only slightly by the claim that the standard course for obtaining informed consent can be justifiably set aside when patients communicate a culturally based desire not to be informed of their diagnosis or prognosis and to have their families make decisions for them. (6)
The call for cultural sensitivity should be lauded for encouraging physicians to consider such diverse sorts of patients' values. Nonetheless, the ethical issues involved in this call are much more complex and difficult than is frequently recognized. They cannot be resolved by merely broadening our view of autonomy. …