Clinician Resources: Handling Requests for Nondisclosure

Experts Offer a Clinical Approach

When family members request that bad news be withheld from their loved one, a cooperative strategy is most likely to result in the right approach for the patient. _______________________

A family's request that a clinician not reveal bad news to a patient raises legitimate ethical issues, and may cause considerable distress when the situation is viewed as an I win/you lose dilemma. Either the patient is told despite the family’s wishes, or the patient is not told in violation of the physician’s medical values.

"We think, however, there is a third way that often allows satisfaction of the patient, the family, and the physician’s concerns," write two experts in physician-patient communication in the Journal of Clinical Oncology. The authors propose a strategy using negotiation skills and an understanding of the cultural factors underlying each party’s point of view, based on related communication techniques and their own experience.

Until relatively recently, nondisclosure of medical bad news such as diagnosis of terminal illness or  poor prognosis was the norm in this country, and is still traditional in most other countries, the authors point out. Thus, it is not uncommon to encounter families believing it their duty to protect a loved one from the burden of making difficult medical decisions.

The article includes a table with examples of skilled and less skilled ways to express clinician values about nondisclosure. Sample questions show how to elicit a family member’s "explanatory model" of illness: what the person thinks has happened, what will happen, how the illness should be managed, and by whom.

Responding to a Request for Nondisclosure

• Do not overreact. Take a deep breath and acknowledge to yourself that this will be a difficult conversation. Arrange for an appropriate place and enough time to address the request.
  
  
• Step back and try to understand the reason for the family's request before sharing your own concerns. "Tell me more about your loved one." Explore their explanatory model of the illness, and identify the normal roles of the patient and relative(s) within the family. "Who do you believe should be the decision maker, if not the patient, and why?"
  
  
• Be flexible enough to reconsider the significance of patient autonomy if the patient had explicitly expressed the desire not to be told of a terminal illness. Offer to think through the implications with the family. “I wonder if you have thought about some of the practical issues associated with not telling your mother about her diagnosis. May I mention some of my concerns?”
  
  
• Respond empathically to emotional distress. Fostering a connection can lower the emotional temperature and build a foundation for subsequent negotiation. "I appreciate and share your concern. None of us wants her to lose hope. We all want what is best for her."
  
  
• Talk to the family about what the patient would want. Even in cultures with a tradition of family decision making, an individual may want to decide for herself. If the family appears merely to assume patient agreement with nondisclosure, open the possibility that she might feel otherwise. "I wonder how we would know if your mother did want to know more about her illness."
  
  
• State your views as your views. Speak in the first person ("I think..."), avoiding confrontational universalities ("The patient has a right..."). Stress the common ground shared with the family in wanting what is best for the patient. "Just as you have an obligation to your mother as a family member, I have an obligation as her physician. My obligation is to make sure she gets the best possible care, and is involved in decision making to the degree she wishes."
  
  
• Negotiate your approach to talking with the patient. Make it clear that, although you could not lie if asked a direct question, your goal is not to talk the patient into anything. "I'm fine with your being the decision maker, if that is what your mother wants. I just want to confirm that, so we know we are doing what she wants." Set up certain ground rules beforehand and discuss possible outcomes. For instance, if the patient does wish to be told, should he or she be offered the choice of hearing bad news from the physician or a family member? Would the family be comfortable doing this?
  
  
• Begin your talk with the patient with an open ended question. "What is your understanding of your medical condition?" Depending upon physician preference, the question about disclosure may be presented neutrally ("Some patients want to be told directly about their illnesses, and others would prefer for the family to be in charge. What do you want in this regard?") or slanted in favor of nondisclosure ("Your daughters told me that in your family, details and decisions regarding your illness and care should be handled by them. This is fine with me, if this is what you wish."). If the patient declares the desire to be told, this must be pursued.

Source: “A Request for Nondisclosure: Don’t Tell Mother,” Journal of Clinical Oncology; November 1, 2007; 25(31):5030-5034. Hallenbeck J, Arnold R; Division of General Medicine, Stanford University, Stanford, California; Veterans Affairs Palo Alto Health Care System, Palo Alto, California; and University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

Reprinted with permission from Quality of Life Matters, copyright 2008. Published by Quality of Life Publishing Co., Naples, FL.