Negotiating a Request for Nondisclosure
Am Fam Physician. 2003 Jan 1;67(1):209-211.
Yellowing skin and a complaint of fatigue accompanied the smile and sparkling eyes of the 70-year-old Greek matron. Through her family translator, she asked: “Should we try chemotherapy?”
She had been told about her pancreatic cancer when it was discovered a month earlier at the hospital emergency department. However, when liver metastases were found on laparotomy, the surgeon complied with her family's wishes and did not inform her of the metastases. Her family asked that I, too, not tell her about the metastases. They said,“she will give up hope,” and “this is how the doctors do things in Greece.” The patient's family seemed to have her best interest at heart, and they believed that she would not want to know.
How can I determine what the patient really wants? What should I tell her? How can I expect to guide her toward a rational decision about chemotherapy without fully disclosing her metastases?
If this were my mother, I think she would want to know.
Although it is at odds with our predominant medical ethical culture, many families and patients desire nondisclosure of bad news. In several countries, including Greece, nondisclosure of difficult medical information is preferred.1 And in fact, truth-telling has only recently become the norm in the United States.1,2
The powerful concept of patient autonomy underlies our American preference for telling patients the truth.3 Many of our common practices support patient autonomy, such as encouraging and directly discussing advance directives with patients. The Patient Self-Determination Act states that all patients must be offered education about advance directives on hospital admission.4 Our ethical culture expects that patients will be told the truth regarding a terminal illness or a poor prognosis.2 In addition, informed consent before procedures and other interventions assumes an acceptance of the truth.2 Our cultural bias in favor of truth-telling is increased by our litigious society, in which physicians may be held liable if they do not accurately inform patients about diagnosis, treatment options, and risks.
Despite this culture and its good intent, some ethnic American groups perceive and manage end-of-life issues differently.2 Surveys show that many ethnic and Native Americans would not want to be told distressing news about their health.1,2,4,5 As a result, our bias in favor of truth-telling risks alienating these patients and their families.
Because terminal illness and death are deeply personal experiences, the wishes of the dying patient should be considered. Fortunately, it is possible for family physicians to respect the unique preferences of an individual patient and his or her family in a way that is acceptable to our contemporary society and medical system, even in the case of a request for nondisclosure.3,5
A method specifically designed for negotiating nondisclosure requests was developed by Dr. James Hallenbeck.3 We have adapted Hallenbeck's steps, listed below, to include our suggestions for how each step might be applied in this scenario.
1. The family physician makes a statement of respect to the family. Example: “I realize that you and your mother are facing a very intense and personal time right now, and that different people have different ways in which they would like these things to be handled. Thank you for telling me about your preferences.”
2. The physician elicits issues underlying this request. Example: “Is there a specific situation that you fear might occur if I were to speak directly to your mother about her metastases?”
3. The physician asks what the family believes the patient thinks about this issue. Example: “How has your mother dealt with other family members' or her own health issues in the past? Have you previously discussed with your mother the issue of telling people bad news about their health?”
4. The physician explains his own values to the family. Example: “In American culture, it is customary to let clear-thinking patients make their own informed choices. If my mother were in this situation, I believe she would prefer to be fully informed and make her own decisions. However, I realize this is a personal issue.”
5. The physician proposes a negotiated approach. Example:“I understand and appreciate your preferences. Now I will just confirm with your mother that she desires this approach.”
6. The physician sets ground rules for negotiation with the family and explains that he must follow the patient's wishes, because doing otherwise would be unethical. Example: “If your mother wants you to handle the information and decision-making, then I will respect her wishes and not tell her about the metastases or their effect on her prognosis. Instead, I will work through you. If, however, she prefers to be fully informed and to participate in decisions, then we must tell her about the metastases and other details as they arise and give her a central role in decision-making.”
7. The physician discusses the issue with the patient. Example: “I have been told by your son that medical information and decision-making in your family is generally handled by a patient's relatives rather than by the patient. Is this how you want me to proceed in your case, or would you prefer to be more involved?” After listening to the patient's answer, the doctor can ask follow-up questions to clarify the details of her preferences, such as “Who would you like to make medical decisions for you?” or “Why do you prefer to do it this way?”3
With this approach, the physician respects the patient's autonomy by allowing her to choose how the situation is to be managed. Family members are heard, and their preferences are followed if that is what the patient truly wants. The physician satisfies our cultural ethic of supporting patient autonomy, and at the same time respects the cultural preferences of the patient and her family.
Some physicians may be uncomfortable with this approach because of legal concerns. They may wonder if complying with a patient's request for nondisclosure is possible without violating legal regulations. U.S. law and our judicial system's application of it suggest that, in the appropriate context, physicians are not liable for choosing nondisclosure. This interpretation would apply when a patient has expressed a clear desire not to be informed of bad news or when truth-telling could cause the patient significant harm. For example, nondisclosure could be considered reasonable in the case of a patient with severe depression who was at risk of attempting suicide.6 This possibility highlights the need for thorough and prompt documentation of all discussions in the medical chart. In addition, when unusual challenges arise, physicians can seek the advice of an ethical consultant or ethics committee.
If language is a barrier, the physician should use a professional translator, preferably one who is not related to the patient (federal law requires that health care systems accepting Medicare dollars offer qualified assistance with any language, and at no cost to the patient). If the physician feels uncomfortable fulfilling the wishes of this patient, he should seek further cultural advice. Perhaps even more importantly, he should question the source of his discomfort: Is his understanding of her wishes clear enough? Has a miscommunication about substance, intent, or feeling occurred?5,7 Is the physician concerned about liability?6 Has he effectively suspended his own biases?
Although this scenario may feel personal to the physician, he must bear in mind that it is not about him. It is about the patient—and she is not his mother.
REFERENCESshow all references
1. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives. JAMA. 2001;286:2993–3001....
2. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274:820–5.
3. Hallenbeck JL. Intercultural differences and communication at the end of life. Prim Care. 2001;28:401–13.
4. Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation. Benefit or harm?. JAMA. 1995;274:826–9.
5. Carrese JA, Rhodes LA. Bridging cultural differences in medical practice. The case of discussing negative information with Navajo patients. J Gen Intern Med. 2000;15:92–6.
6. Gostin LO. Informed consent, cultural sensitivity, and respect for persons. JAMA. 1995;274:844–5.
7. Stone D, Patton B, Heen S. Difficult conversations: how to discuss what matters most. New York, N.Y.: Penguin Books, 1999:21–128.
Please send scenarios to Caroline Wellbery, MD, at email@example.com. Materials are edited to retain confidentiality.
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