It goes without saying that good surgical care is based on honesty in informed consent. The ethical basis of telling patients about their conditions and what needs to be done is central to what surgeons do. In this context, a request not to tell a patient a diagnosis is always jarring to me. One of the ethical principles that medicine has most fully embraced in the last few decades has been respect for patient autonomy. This principle is very much in opposition with the previous practice of paternalism in the prior era of medical care in which "the doctor knows best" and doctors made decisions for their patients. As a practicing surgeon today, I feel that there is very little that I know that I cannot disclose to my patient. However, occasionally cases challenge our underlying assumptions.
A few years ago, I saw an 11-year-old girl with a recent diagnosis of papillary thyroid cancer. Before I even saw her, the parents had called my office to be sure that I did not tell her the diagnosis of cancer. I found this request to be troubling. How could I discuss the operation with this child without telling her that she had cancer? Her parents assured me that she knew that she had a thyroid nodule and that on the basis of the biopsy, that she would need a thyroidectomy. The only thing that had not been explained to the child was the diagnosis of thyroid cancer.
Despite my initial concern with this request, in pediatrics, the parents are the decision makers for the child, so that there was no legal reason why the patient needed to be told that she had cancer. Nevertheless, the ethical imperative to include the diagnosis of cancer in the discussion about surgery weighed on me. Despite my initial opposition to being put in the position of not telling the patient of her diagnosis, I decided that I could do nothing more at that point. I hoped to convince the parents to let me share the diagnosis with their daughter at a later time.
When I met my patient, I found her to be a quiet and calm girl who seemed to me to be mature beyond her years. I proceeded to explain the risks of thyroidectomy to the patient and her parents. She seemed to take it all in and asked good questions about the operation and the recovery. She wanted to know how long before she could get back to school and sports. At the end of the consultation, the patient’s mother asked her to wait with her younger sister and her grandmother in the waiting room for a few minutes while the parents spoke to me alone.
Once she had left, the parents expressed their appreciation that I had not told her she had cancer. I told them how impressed I was with her poise and maturity and that although I did not agree with their decision not to tell her the diagnosis, I would certainly go along with it based on the assumption that they knew what would be in her best interests better than I. They seemed relieved that I was willing to go along with their decision. I realized at that point that the ethical arguments in favor of telling the patient of her diagnosis would likely be unconvincing for the parents, so I decided to focus instead on the practical problems with nondisclosure.
I asked the parents to consider that the operative schedule would include the diagnosis of thyroid cancer and that everyone seeing her in the hospital (doctors, nurses, etc.) would know her diagnosis. For all of these reasons, there would be a high likelihood that at some point during her hospital stay, someone would slip, and she would learn of the diagnosis in an uncontrolled manner from someone other than her parents or her doctor. In addition, I suggested that she would likely figure it out anyway even if no one told her. Finally, I asked them to consider the next few years. If they did not tell her the diagnosis of cancer now, at what point would they choose to do so? Certainly, at the point that she turned 18 years old, she would need to know the diagnosis, but would the parents want to hide it from her that long, even if they could?
The parents seemed to have not thought of all of these issues and answered that they fully wanted to tell her, but they were concerned about doing so when they, themselves, were still so upset by the diagnosis. They explained that they planned to tell her when they felt more in control of their own emotions.