Each Thursday, the Daily Voice showcases selected Thursday Morning Memos, reflective essays about clinical experiences written by faculty, residents and alumni of the Department of Family Medicine & Community Health. Thursday Morning Memos is UMass Medical School’s homegrown version of narrative medicine, in which the authors process their experiences through writing. To learn more: http://www.umassmed.edu/news/articles/2011/personal_stories.aspx?
Former UMMS resident Clara Keegan, MD, reminds us about the importance of accepting mistakes, talking with patients about them, thinking about communicating bad news and sharing these lessons with colleagues. And in the end, her story is one of success as she and her patient worked through his condition together, as she offered compassionate, continuous care.—Hugh Silk, MD.
I teach the process of giving bad news to medical students, residents and other attending physicians, so I have excuses but no good explanation for why I chose to violate the cardinal rule: never give bad news over the phone. I hope my tale of woe (which works out okay in the end) can be a useful caution to help others avoid making the same mistake.
When Jim first came to see me last May, his only concern was total body itching. No rash, no fever, no belly pain, no nausea, no bowel changes, nothing. It was disrupting his sleep. I suggested my usual combination of over-the-counter H1 and H2 blockers, and ordered some labs, including a liver panel. I doubted hyperbilirubinemia, though, as he was not jaundiced at all.
The results came back in the evening on a Friday. Indeed, the total bilirubin was elevated, as were the liver enzymes. They weren’t three times the upper limit of normal, and he’d been feeling fine, so I waited until Monday to call and ask him to repeat the labs. By then, the itching was worse, and his wife (a former hospice nurse) now thought he might be a little yellow.
The repeat labs confirmed some sort of biliary obstruction, with increased elevation of liver enzymes and direct bilirubin. The hepatitis panel was pending. I spoke to Jim and his wife over the phone and recommended an ultrasound. I reviewed several possible causes, such as an obstructing gallstone, a viral process, or the worst case scenario, pancreatic cancer. I tried to be reassuring about how rare pancreatic cancer is, and mentioned that even in that worst case, the cancers that present like this are usually caught earlier and thus are the ones that can sometimes respond to surgery.
On Wednesday the radiologist called me to describe the mass in the head of the pancreas, as well as additional lesions in the liver suggesting metastasis. I called our oncologist, who recommended admission that day for placement of a biliary duct stent and CT-guided biopsy.
I decided I would call Jim to get the admission going quickly. I didn’t ask my colleagues for any suggestions. I figured that the anticipatory guidance I had given regarding the possibility of pancreatic cancer was adequate preparation, and that he would understand the importance of moving quickly. He took the news quietly, then quickly began to sound anxious, and told me his wife wasn’t home. That’s okay, I told him, I’ll get the direct admission arranged while she comes home to get you and we’ll call you when the bed is ready.
I went to see them that afternoon. Jim said, “What do I have, six months?” His wife asked me quietly, “What does he have, two months?” I was completely unprepared to prognosticate and deferred to the oncologist, as we so often do. I offered support, increased dosages of clonazepam and paroxetine, and helped arrange follow-up with oncology. The stent was placed successfully by one of our endoscopists, biopsy was felt to be unnecessary (especially with a CA 19-9 level of over 30,000 units/ml), and Jim was discharged home after one or two days to start oral "palliative" chemotherapy.
Over the next few months, I continued to do what I could to support Jim. I completed paperwork so he could resign from his job. I saw him less than a week after his hospitalization and diagnosed a venous thromboembolism in one leg, helped him get started on anticoagulants, and expedited follow-up with his oncologist. When blood sugars went up, I worked with Jim and his wife to explain why diabetes might follow this diagnosis, and set up an insulin schedule. I supported his decision to stop taking his statin and helped coordinate care with his cardiologist.
At our last visit in November, we talked about his mood. His wife was worried about depressive symptoms, but my impression was of appropriate reactions to life stressors rather than an under-medicated chemical imbalance. After we reviewed how he was managing each of his chronic conditions, Jim told me, “There is one thing I wish was different. I wish you hadn’t told me that I have pancreatic cancer over the phone.” That was hard to hear, but I had thought about it many times, and also wished I had proceeded differently. I told him as much, explained why I hadn’t known what else to do, thanked him for his honesty, and asked if he had a suggestion for me for the future. His thought was that I could have visited him at home. While this is not out of the question, it wouldn’t be a typical course of action.
Later that day, I talked through the events with my colleagues. We agreed that I could have found space for him in the office on the day of diagnosis. My thought has always been that it is just as bad to use the telephone to tell someone that we need to talk in the office and that he should bring his wife with him – doesn’t that make it obvious that there is bad news? But with a little more effort, I could have prepared myself to say, “I have talked about your ultrasound with the radiologist and other physicians, and we agree that we need to treat you in the hospital as soon as possible. Would you like to talk about more details in the office with me today, or would you prefer for me to meet you at the hospital?”
When I see bad results and know I am the one who needs to deliver the news, part of me feels an obligation to tell the patient as quickly as possible. With my palliative care work, however, I have been reviewing and reinforcing the importance of a careful and deliberate approach to the preparation process. I now try to get data on median survival rates, and always speak with a specialist regarding the next steps for care. If I anticipate a difficult result, I schedule the follow-up office visit when we schedule the testing, or at least ask the patient how he would prefer to receive results. If no visit was scheduled, I contact the patient with my schedule available so I can find a time that accommodates us both.
Now I know that the 5 year survival rate with pancreatic cancer is less than 5 percent. It looks like Jim will be one of those 5 percent. His CA 19-9 level dropped tenfold after three months of chemotherapy, and was less than 100 units/ml earlier this month. He no longer needs long-acting insulin and uses only small amounts of rapid-acting insulin based on blood sugars. He is enjoying his free time and devoting as much time as possible to his favorite leisure activities. He is pleased with his response to treatment and is looking forward to the future with a renewed sense of what is important in life.