Last month’s blog concluded with the suggestion that today’s diverse healthcare environment requires a broadened conceptual framework that would allow patients the right to choose between two relational paradigms involving the patient him- or herself and the physician.

• The first, the traditionally accepted paradigm in the American medical system, is guided by principles of patient autonomy and informed consent.
• The second, which is traditionally followed by the more collectivist societies from which many of our diverse patients come, is the right to choose limited knowledge of one’s illness and prognosis and a decision-making process that either includes or is transferred to family and/or community.

This month’s blog provides additional insight into how each choice might play out in practice. Neither of the two noted paradigms should be taken for granted. In each individual case, prior to diagnosis, caregivers would need to ask the patient specifically, though possibly indirectly:

• how medical decisions are traditionally reached in that individual’s family and cultural group
• whom the patient wants to be involved in her or his health decisions, and
• how much the patient wishes to be told about the diagnosis and prognosis.

Healthcare workers should keep in mind that the patient might be as unused to our notions of autonomy as most native-born Americans are of family responsibility for decision-making. Thus, patient education might include an explanation of conventional procedures involving autonomy and consent. For example, the healthcare worker might explain that customarily patients in the United States are given complete information about their illnesses as well as the various options for treatment and the possible negative effects of each intervention so that they can choose which treatment plan they wish to follow. The healthcare worker would then need to directly ask each individual patient whether or not he or she wishes to be given a full disclosure of the diagnosis and prognoses of the present illness or whether this information should first be disclosed to the family or to a designated family member. The patient should be given the chance to indicate who in the family has the patient’s permission to determine how much he/she should be told and how he/she should be told, as well as who should convey that information. In other words, it is as important to respect a patient’s right not to know and not to make autonomous decisions based on being fully informed about his or her condition as it is to respect the patient’s right to full disclosure. This recommendation may be a sticky legal issue under our present laws, but patient diversity suggests the need to re-examine current policies. According to the third principle of the Code of Medical Ethics developed by the AMA, it is the physician’s “responsibility to seek changes in those [legal] requirements which are contrary to the best interest of the patient.”If you were ill, would you want to be told “the whole truth, and nothing but the truth” or would you prefer a modified version of your diagnosis and prognosis? In your culture and/or family, how are medical decisions made? How important is autonomy and the responsibility of medical decision-making to you? Do you know of any particular patient or patients who simply gave up hope after being given a less than positive prognosis? Do you know of anyone who was made to feel overly stressed or burdened when their physician simply presented them with a number of treatment options and asked them to choose which one to follow?