You are caring for a 75-year-old woman from Korea who was admitted for fatigue and weight loss. Diagnostic tests including a CT scan are highly suspicious for lymphoma. Her family is always at her bedside and, from the time of admission, her son requests that all test requests and results be discussed with him first. The patient does not speak English. When hearing of the probable diagnosis of cancer, the son states that he does not want his mother to be told of the diagnosis because telling her will “kill her.” The consulting oncologist feels that the patient has a very treatable form of lymphoma; however, the patient will first need a biopsy and will subsequently require chemotherapy, which will involve multiple visits to the infusion center. The medical team does not feel that it is appropriate or feasible to administer chemotherapy without discussing the diagnosis with the patient. The son requests that the medical team keep the diagnosis a secret and inform the patient that the planned chemotherapy sessions are vitamin treatments.
The son very much wants the chemo; however, he refuses to allow a discussion with the patient. The oncologist will not treat without this discussion. How do you respond?
The guiding principles of medical ethics include autonomy, beneficence (act in the best interest of the patient), non-maleficence (first do no harm), justice (fairness and equality in care), respect for people, and truthfulness. In this situation, the treating physicians have good reason to be concerned that the son’s request violates basic principles of medical ethics. As the treating physician, your first responsibility is always to the patient. However, in this case, the patient’s son presents a constant obstacle and you hope to avoid conflict. To complicate matters, the son’s request will prevent the patient from receiving potentially life-prolonging care as the oncologist will not treat the patient without her informed consent.
There are several factors to consider in this situation. First, one must consider the cultural values that may be involved. While in the U.S., the concept of truth telling with patients is the norm; in many other cultures it is socially appropriate and at times even common to withhold information from patients. In many societies doctors take on a more paternalistic role with their patients (doctor knows best.) Also, it is common for the elderly to rely on their families to make decisions on their behalf. If this is in fact the cultural norm for this family, it may not be appropriate to force western principles of medical ethics on this family. However, lying to patients, especially when treatments like chemotherapy are involved, is certainly a reason for concern for treating doctors. Providing a treatment, which can cause harm, without patient consent could be considered medical “assault and battery.” Another concern is that keeping a secret from a patient, even one who does not speak English, can be very difficult in the hospital setting. On any given day, between doctors, nurses, aides, students and allied health personnel, a patient likely interacts with more than 20 people. If just one staff member in a moment of kindness, expresses his or her concern –in Korean – to the patient for her cancer, the emotional effect on the patient could be devastating.
So, what is the best way to proceed? The AMA code of ethics recommends that the physician speak with the patient and her family. The physician can inform the patient that they have health matters they need to discuss and should offer the patient the option of being told the clinical situation or if they prefer, they can designate a member of their family to serve as a health care proxy. This allows the patient the right to autonomy with decision making, and opens the framework for a surrogate to make some, or all of the decisions for the patients’ health care. If the patient declines to participate in the discussion, the treating physician can feel comfortable that they are meeting appropriate ethical standards. This shared discussion also preserves the bonds of trust between the family and the treating physician.
The physician meets with both the patient and the son. With a medical translator present, they inform the patient that they have health issues with important decisions which must be made. They ask if the patient would like to be involved in these decisions or would prefer to have her son make the choices. The patient states that she suspected that she was very sick and she knows that she will not live forever. She is worried that she has cancer. Her hopes are to live a fulfilled life and not suffer at the end of life. She states that she is comfortable with her son making complicated medical decisions and she signs a health care proxy form. She does want to know if she will experience pain with any of the planned treatments. She and her son privately discuss the role of chemotherapy, which she begins the next week.