“Don’t You Think They Should Have Told Me?” Is Full Disclosure Always Necessary?
We hear a lot about the need to provide “full disclosure” to our patients—and rightfully so—but what exactly is appropriate? Just listen to the ads on television for various medications; one is struck by the litany of possible side effects that would make anyone fear taking the medication if they gave it any thought. Is this the right forum in the first place to let the public know about a medication for a specific problem? Some would argue that it is not.
What exactly is full disclosure, and when is it okay to hold back information from a patient? I will share a personal situation with the readership, as I believe my experience can help stimulate thought on what I consider to be a key issue for any physician.
For the past year, my family has been dealing with my wife’s diagnosis of advanced breast cancer. After the initial shock of finding out about the problem, she proceeded with treatment; the chemotherapy took its toll for six months. Neutropenia, infections, anemia, and electrolyte disturbances were daily occurrences, not to mention the side effects of incapacitating fatigue and malaise. Then came surgery, with its own set of side effects—some short-term and some that will linger, such as lymphedema with its required daily massages and use of a compression device for two hours a day.
Radiation seemed like a piece of cake for the first few weeks and went well until the last week, when radiation burns appeared and became a greater problem. A variety of creams were prescribed. Throughout her radiation course, my wife told me of persons who had started treatment when she did but who chose to “drop out.” They apparently were unwilling to bear the continued pain and discomfort, and were willing to take the added risk involved from not completing what was considered to be standard treatment.
My wife, being of Nordic origin, is not one to complain, and is one whom I know to have a high tolerance for pain; however, as the weeks of radiation continued, I noted that pain medications were being used with increased frequency. Her face could not hide the significant pain that the burns were causing. On her next-to-last day of treatment, she was told that the skin changes and pain “could actually continue to get worse for a few weeks before healing would occur.” I remember her asking me, “Don’t you think they should have told me this earlier?” She informed me that her pain was “worse than I had after my radical surgery.” She was thankful for the severed nerves from surgery, claiming that she could only imagine how much more pain she would have had from the radiation if she had her normal nerves intact. While I cannot help but think that failure to complete the course of radiation treatment was never an option in her mind, I wonder just how many others would have quit earlier if they had known what was truly in store.
We know that pain has a subjective as well as an objective component. Fearing more pain can make one experience more pain, or at least the perception of more pain. Just how much do we as physicians “need” to disclose? Clearly, the radiation specialists knew what was expected to occur in patients with similar courses of radiation. Were they wrong to take each day as it came and wait until almost the end of the course of treatment to disclose what would most likely be several more weeks of significant pain and discomfort?
Given the situation, and knowing what I know now, I appreciate the difficult position they were in. I view these specialists as cheerleaders, doing whatever they can to urge the patient on and encourage him or her to complete what is most certainly an arduous and painful path. Communicating all of the details too early could potentially be a factor in a patient’s decision to discontinue treatment. Was my wife given “full disclosure”? Probably not, but given the relatively high drop-out rate of a treatment essential to survival, the amount of information provided was expertly handled in my opinion.
Each physician needs to find his or her own way to practice the “Art of Medicine,” and not be swayed by “buzzwords” or fears of repercussion. We are all cheerleaders in a way, doing our best to encourage patients to finish their course of antibiotics, continue to take their antihypertensive medications, and complete a course of difficult cancer treatment, among many other daily tasks. While we can’t always do “whatever it takes” to accomplish these goals, we must always be truthful and honorable. We need to individually decide what will work best under the circumstances we face and continue to practice the Art of Medicine as best we can.
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