March 28, 2013
Associate professor Barry Saver, MD, MPH, a faculty member at Family Health Center of Worcester, continues with the theme of being there for a patient and the family at the end of life. His story is about the powerful role we play in each person’s life that we touch, sometimes more powerful than we know. His essay reminds me of a patient I had where my efforts felt so fruitless during the last few months of his life and yet, after Doug’s passing, the family thanked me in the obituary. That obituary hung over my desk at Hahnemann with his photo looking down on me until I packed up my office. As William Carlos Williams said, “We hand each other along.’”—Hugh Silk, MD
I bumped into a colleague—a geriatrician and palliative care doc—in the hall of the hospital one morning. He greeted me a bit oddly. “Have you read the obits in today’s paper?”
“No,” I said. “I never read the obits.”
“I think you should,” he told me.
So, that evening, I hunted down the obituaries in the paper trying to figure out what I should be looking for. I found the obituary of a patient of mine, Jimmy, who had died from lung cancer a few days earlier. Halfway through the notice, I discovered why my colleague had suggested I should take a look. To my astonishment, I saw that his family had thanked me, by name, in his obituary.
Jimmy had been my patient for around four or five years. He was a “noncompliant, chronic alcoholic with an uncontrolled seizure disorder.” He drank heavily on a regular basis and he frequently forgot to take his phenytoin when drinking. As with almost every heavy drinker I’ve known, he was also a heavy smoker. But he was a nice guy and was never rude or abusive when he came to his appointments. He supported himself by cleaning up and doing other odd jobs in a bar run by a friend. He was a huge sports fan, something in which I had no interest and limited knowledge. I’d talk to him about trying to quit drinking and smoking and about taking his phenytoin.
Eventually, he decided to quit drinking. A few months later, he quit smoking. It seemed his life was really turning around. Unfortunately, about six months later, he got diagnosed with squamous cell lung cancer. It was localized and he had a lobectomy. He had an uncomplicated recovery and continued his new life as a sober nonsmoker. I had less to do for him—no more urging him to quit drinking and smoking, no more need to encourage him to remember the phenytoin. He’d tell me stories about other alcoholics he knew who were still drinking, living on the street, pulling scams to get a little money. I’d try to pretend I knew something about baseball, football or basketball, depending on the time of year.
Around a couple of years after the surgery, he came in sick—coughing, fever, short of breath. Antibiotics fixed the pneumonia pretty quickly, but I had to tell him that the X-rays showed that the lung cancer was back. He looked at me and said, “So, I guess you’re done with me, huh?”
I was stunned. I had no clue where that had come from. I think I said, “What the hell do you mean by that?” I usually don’t swear in front of patients, but this had caught me completely off guard. I told him that, no, my job was to be with him through what was coming and to help wherever I could.
A workup confirmed that the tumor was inoperable. Pretty rapidly, he got weaker. The clinic social workers managed to get him a bed in a residential hospice. I didn’t have privileges at the hospice, but I had said I’d stick with him, so I tried to stop by every week on my way home after clinic for a social visit.
Since I had no real medical role, mostly I sat and talked with Jimmy. I learned that he had been estranged from his family for most of his adult life. And eventually he told me how his younger brother, with whom he shared a bedroom, had died of an asthma attack when they were kids. He had spent the rest of his life blaming himself for the death even though, at some level, he knew there was nothing he could have done—his brother had severe asthma and, in fact, had just returned after spending the entire summer away at an asthma specialty hospital. As he got older, Jimmy started drinking.
Eventually, with a lot of trepidation, he decided to contact a family member to see if they would be willing to talk with him. It turned out that his family very much wanted to be back in contact with him. It was not that they had disowned him as an alcoholic, but rather that he had kept himself away from them. Quickly, his room filled with albums of photos and other memorabilia from his childhood, cards, balloons and flowers. I learned that his love of baseball came, in part, from his having been a very good player when he was younger. As his condition worsened, he insisted on giving me one of his baseball caps, which he said was a special one and had always been lucky for him. He taught me about palliative care. Desperate for more time, now that he was reconnected with his family, he signed up for “palliative chemotherapy.” The best I can say is that it didn’t seem to make him a lot sicker but, unsurprisingly, there was no tumor response. This made me realize there was a real need for interventions to help patients understand the likely experiences and outcomes of their treatment decisions. Near the end, he got sick of his PCA [patient-controlled analgesia] morphine and ripped the IV out. I got a call from the hospice asking if I could convince him to resume, because he wouldn’t listen to anyone else. I learned from my colleague in palliative care that it is possible to be on such a high dose of intravenous morphine that it is simply impossible to take an equivalent amount orally, and that the initial compromise I had negotiated could not help. The only way to avoid a severe pain crisis was to get him to accept an IV and the PCA back.
Shortly after that, I received the news that he had died. I had thought that was the end of my role. But a day or two after I was advised to read the obits, his sister contacted me and asked if I’d be willing to come and speak at his funeral. I was flabbergasted again. Funerals are for families and friends to speak at, not doctors. I have no recollection of what I said when my turn came to speak at the service. I know it felt inadequate to me, but hopefully not to his family and friends.
Jimmy did all the hard work in the time I knew him. He quit drinking. He quit smoking. He lived with and died from lung cancer. He reached out to and reconnected with his family. I did very little—I didn’t operate on his first tumor, I didn’t give him (useless) chemo after his recurrence, and I didn’t even manage his hospice care. I just listened and talked, which is most of what we do in primary care. Jimmy, a “noncompliant, chronic alcoholic with an uncontrolled seizure disorder,” reminded me that listening and talking can be the most important therapy of all.
Each Thursday, the Daily Voice showcases selected Thursday Morning Memos, reflective essays about clinical experiences written by faculty, alumni, residents and students of the Department of Family Medicine & Community Health and, occasionally, contributors from other departments. 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, visit: http://www.umassmed.edu/news/articles/2011/personal_stories.aspx.