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When words are no longer enough
Communicating with patients through e-mail is a frontier that all physicians will have to tackle eventually.
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Jeffrey was just 38 years old with an incurable disease and little time to live. He was years ago diagnosed with a low-grade brain tumor, having undergone resection, radiation therapy and chemotherapy in a valiant fight. Much of this battle was under the care of an oncology fellow before me. Unfortunately, a recent MRI obtained for new and concerning symptoms showed an expanding lesion not previously visualized. On biopsy, the histology of this new mass was highly aggressive and more foreboding than his previous tumor. It was in this setting that Jeffrey and his wife met me, their new oncologist, for the first time.
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Jeffrey was highly intelligent and highly motivated. Married with two young, beautiful children, Jeffrey had a wonderful family and a satisfying job as a computer programmer. Despite the clinical twists and turns that his case had taken, several for the worse, he remained loyal and committed to the cancer center that was affiliated with his undergraduate alma mater. And he seemed willing to entrust his care to a first-year fellow fresh out of residency with little clinical oncology experience.
As my relationship with Jeffrey evolved, his condition unfortunately deteriorated. He failed two chemotherapy regimens without any response on MRI. His cancer was relentless.
As Jeffrey’s tumor grew, he began to lose the ability to perform activities that had been previously effortless. His balance and coordination worsened, and his peripheral vision lost its clarity. He started to skip words that were too difficult to enunciate, and his verbal language devolved into a series of nods, head shakes and grunts.
With these changes, Jeffrey grew more focused on his work and his e-mail. Jeffrey continued to show up to his job every day and poured himself into his projects. Though the task was laborious, he spent hours methodically writing e-mails that would deliver the coherence and eloquence that he could no longer speak. His e-mails became his lifeline with his world and with me, the representative of his medical care.
At first, his e-mails to me were straightforward. I found that using e-mail to clarify a dose of steroids or to confirm a prescription renewal provided a clear and enduring way to communicate medical goals. With time, though, these e-mails became more complex. In one instance, Jeffrey was able to gain access to the results of a restaging MRI. When he struggled to interpret the radiologist’s description of his tumor location, his frustration gave way to anger and hurt as he realized that he didn’t know as much as he thought he did. He expressed this to me in an e-mail with clipped sentences, rapid fire questions and liberal use of punctuation to convey his bewilderment and mental anguish.
I grew to dread Jeffrey’s e-mails, mostly because of my own emotional reaction that accompanied my efforts to interpret them and to respond. But I knew that e-mail was the only way for Jeffrey to break through his increasingly restrictive language barriers and to voice his worries and fears as the end drew nearer.
One day I stopped receiving Jeffrey’s e-mails. Shortly before his death, though, I received one last e-mail from his account. This one was from his wife, poignantly asking about how to donate to brain cancer research in Jeffrey’s memory.
The use of e-mail as communication between patient and physician becomes more ubiquitous with each passing year. As I reflected on my own experience, several unanswered questions came to mind.
When we use e-mail to communicate with our seriously ill patients, how can we be gentle without being evasive? How can we be straightforward without being too blunt or unfeeling?
How can we be professional without being stilted, or warm without being too informal?
How can we be present emotionally and spiritually for our dying patients through e-mail?
Though I don’t know the answers to these questions, I don’t think that this will be the last time that I ask them. Communication in an electronic age has the potential for efficiency, but carries its own set of challenges. These challenges are magnified in the unique and complicated population of patients that we treat.
Bill Wood is a second year Hematology/Oncology Fellow at the University of North Carolina Chapel Hill and is a member of the HemOnc Today Editorial Board.