When Guidelines Are Not Enough

Not long ago, on a Friday afternoon, I was called by an experienced and thoughtful medical oncologist, Dr Z, whose judgment I had never seen go astray. “Would you mind seeing a patient for me? I know she is not a surgical candidate, but perhaps you can take a look and talk to her and her husband.” “What exactly is her problem?” I asked. “Cheryl is a young woman, recently married, with widely metastatic adrenocortical carcinoma.” He continued, “We’ve used every chemotherapeutic we could think of, but we haven’t been able to contain her cancer. She has numerous lung metastases, with bloody sputum and shortness of breath with activity. Over the past couple of days, she has had severe headaches. Last night, she went to bed because of a bad headache, and this morning she woke up and had trouble walking to the bathroom, had bladder control problems, and had a hard time talking to her husband. Her MRI shows at least three lesions. I don’t have anything else to offer her. I think, at best, she has perhaps a couple of months. She understands that. Still, she wants to keep trying.” I replied, “It sounds like this is really beyond any of us.” “I know, but . . . can you just talk to her and her husband? It would help us all, I think. I know it would help them to hear it from you.” “Okay. What have you told her?” I asked. “Well, everything. Still, I think it would help to hear it from you—a second voice.” I hung up the telephone and pulled up the MRI (Fig 1) on the computer. Three tumors in the left hemisphere, each larger than the next: occipital, motor strip, and Broca’s area. Lots of edema and mass effect. In a woman with multiple pulmonary metastases, one 6 cm or so in size. No systemic options. What could Dr Z be thinking? Whole brain radiation and steroids may give her a bit more time, although she would spend 3 weeks or so doing the radiation. Every textbook, every article, every guideline is clear: surgery in this setting is not indicated. With some reluctance, I walked to the oncology clinic. Dr Z and I spoke again, and I told him that surgery was just not a reasonable option for this woman or anyone. “I know,” he said, “but I am sure she would like to just talk with you. And I think it will help to hear it from you. Here she is,” and he showed me the examination room. “Thanks very much.” I knocked on the examination door. A weary voice invited me in. I immediately saw what I expected: Cheryl was a thin, tired woman, breathing audibly, leaning to the right in her chair, with her head resting against her husband’s shoulder. What really was there to discuss? Nonetheless, she smiled gently when I introduced myself. She labored to get up, but I asked her to stay seated. She was quiet but self-assured. Her husband had a worried look on his face as he shook my hand and said, “Thanks for coming.” I examined her—mild expressive aphasia, reception fine, dense left hemiparesis, and homonymous hemianopsia. Everything one would expect from her scan. Except, of course, that she was calm, almost confident. “I know that this is the end . . . I know.” She was firm and resolute but measured in tone. “My husband and I still have some things we want to do. Mostly, I want to go home. We want to go to the mountains, go to the movies, picnic on the beach, sleep under the stars.” I puzzled over what to say. She was composed, but her passion was palpable. Her husband was quiet, but he shook his head firmly in agreement. We spoke for more than an hour. I gave them all the reasons against surgery: her progressive systemic disease, the risk of working in and around functional areas of the brain, and the chance that we could make things worse, that she may survive and be unable even to enjoy what time she may have. I gave them both all the reasons why one should not operate, the guidelines, the practical experience. She asked, “But, why not, if I understand all that?” I excused myself and called Dr Z. I told him, as I had told Cheryl and her husband, “Of course, I can do surgery, but just because you can, doesn’t mean you should.” He considered the situation. “Cheryl and her husband are smart,” he explained. “I am sure they understand what you are saying. I suspect maybe she can survive two, maybe three, months. Why can’t you operate?” “Because I can make her much worse. And those two months, if she lives that long, could be From the Brain Tumor Institute, Cleveland Clinic, Cleveland, OH.