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Palliative Care Perspectives : Chapter 7: Communication : Communication as storytelling

In learning medical communication skills such as history taking, we are learning to create certain types of stories relative to episodes of illness. Medical stories tend to favor the objective over the subjective. Logic is valued over emotion. In contrast, patients and families commonly work along very different story lines. As suggested throughout this book, problems tend to arise and miscommunication tends to occur when story lines are grossly out of sync, often to the extent that we end up talking past each other.

The stories we create shape our communication, but they also may have profound effects on what actually happens to people. In particular, our medical stories shape what we do to patients. The power of clinicians' stories was not lost on Anatole Broyard when he contemplated the stories of his physicians in relation to his own story as a patient.

When a doctor makes a difficult diagnosis, it is not only his medical knowledge that determines it but a voice in his head. Such a diagnosis depends as much on inspiration as art does. Whether he wants to be or not, the doctor is a storyteller, and he can turn our lives into good or bad stories, regardless of the diagnosis. If my doctor would allow me, I would be glad to help him here, to take him on as my patient.18

Anatole Broyard

In suggesting that he could help the physician by taking him on as his patient, Broyard points to the possibility of collaborative story writing (as well as, perhaps, enjoying a reversal in roles in terms of power). If clinicians are to learn to communicate better with their patients and families, they must learn how better to bring into sync the often very different story lines of themselves, patient, and families.

In this story I put in bold some words peculiar to medical storytelling. In this context their use is entirely normal. However, if extracted from this medical context, as they might be if shared with patients and families, their usage seems very odd.

Perhaps this point can be made clearer through a story. Recently, I was asked to do a palliative care consult on an 80-year-old man in an intensive care unit (ICU). The story I first heard, from the resident physician, was that the patient had presented to the hospital for an elective colonoscopy but was so weak that he began to experience respiratory failure and was emergently intubated. Subsequent work-up revealed that he had advanced metastatic cancer of unknown primary (which carries a grim prognosis). The ICU team was pessimistic about their ability to wean the patient from the ventilator. Remarkably, the patient appeared otherwise comfortable and was reasonably clear thinking, although intubation was a barrier to communication. The team informed him of his grim prognosis and recommended a transition to comfort care. When the patient wrote that he wanted everything done, the team was in a quandary. The patient's situation was perceived as being medically futile, but either the patient did not comprehend this or he had some belief system that required everything to be done. He lacked a designated surrogate decision maker, which worried the team because they did not want to be trapped into providing care they believed to be futile or even harmful based on this directive if or when the patient lost decision-making capacity. An ethics consult was obtained, which concurred that the patient seemed to have decision-making capacity and thus that everything should be done for now. The consult team also laid out the rules to follow in that institution for surrogate decision making, according to the principle of substituted judgment, if or when the patient lost capacity. It was at this time that a palliative care consult was ordered. This story was elicited from clinicians, and additional worries were identified, largely concerning procedural questions - "should we put in a feeding tube, should he receive a tracheostomy?"

A fellow on our service had spoken briefly with the patient before I met him and was astute enough to ask what the patient wanted. The patient wrote "Time." He wanted a year to live. When I met Mr. C, he appeared tired and had a small wash towel on his forehead. "Are you comfortable?" I asked. He nodded. My major task in performing this consult was to identify the varying stories among clinicians and the patient and to see to what extent I could bring these stories together into a (hopefully) mutually agreeable story line, so I tried to understand his story. First, I needed to build a relationship whereupon he would be trusting enough to share his story. Storytelling requires a listener, and for very important, personal stories one has to be worthy of hearing. "I heard you are writing a book about China," I said. Again, he nodded. Mr. C shared some of the specifics, and I told him I had been to China and that indeed a book about the subject would be very interesting. I then inquired as to his understanding of his situation. Usually, at this point I will ask an open-ended question such as "What's your understanding of what has happened to you?" However, because of his intubation, I had to rephrase my questions to the extent possible to facilitate yes-no responses. "Did the doctors tell you what is wrong with you?" Nod. "Did they tell you that you have cancer?" Nod. "That must have been hard news, I'm sorry." Double nod, eyes held half-closed for a second. He clearly understood that he had cancer and that it was bad. "Did they say how much time they thought you had left?" Shrug, indicating he was not sure. Our conversation went on like this. Amidst nods, head shakes, shrugs, and brief, written phrases on a scrap of paper, his story was beginning to take form. Clearly, at that time he was still dealing with his dying as if it were a choice. When he expressed his wish to live for a year to finish his book, I first validated the wish: "Wouldn't that be great!" I said, and I meant it. I then shared with him the bad news, much along the lines outlined later in the text. "I'm afraid I have some bad news. I do not believe, nor do any of the other doctors, that we have the means to keep you alive for a year. I wish we did. I think you probably have days to, at best, a few weeks to live. Sadly, none of us have the power or medical technology to change that." Mr. C closed his eyes briefly but did not look shocked at what I said. After a pause, I asked, "Are you surprised by what I just said?" He shook his head slowly. If he had been able to communicate more freely, I probably would have asked what was going through his mind. However, his intubation prohibited such an open-ended question. Instead, I tried to imagine myself in his position-what it must have been like to come in for an elective procedure and then wake up in an ICU with a tube in your throat and lots of people in white coats zooming about the place. In trying to empathize (and confirm if this was the way he was experiencing things) I said, "I bet this must all be happening very fast for you." He nodded vigorously, and I sensed more emotion in this response than to the bad news I had given him. "I bet you could just use some time to let this sink in." Again, he nodded.

Palliative Care Note
When patients or families express what you believe to be an unrealistic goal or hope, first validate the wish with a statement such as "Wouldn't that be nice!" Later, you can offer your opinion as to how likely it is that the goal will be obtained.

Time was a major theme in both the ICU team's and the patient's stories. The ICU team saw time, a precious resource, as being wasted in providing futile care. The team was also worried that in time Mr. C would lose decision-making capacity, which would only complicate matters. For Mr. C, time was also running out. However, whatever time was left was seen as a precious resource. I saw an opportunity to bring these stories into sync. I suggested to him that time did indeed appear to be short but that being intubated might keep him alive long enough to accomplish some other tasks, if he had any. He wrote, "What about my estate?" He drew a box with the word steel next to it. Misinterpreting, I asked, "Is that a coffin?" He shook his head no. Finally, we figured out he had a steel box at home with his will in it, which he wanted to update. I suggested that we might help get the box. At no time in this conversation did I pressure him to change his mind about the aggressiveness of his care.

I communicated with the ICU team about our conversation and the box. They recognized the shift in goals as a major step forward and launched an effort to retrieve the box. Finally, there was something they could do, and his care was no longer "futile." Their frustration receded. On my next visit Mr. C was visibly glad to see me and happy that efforts were under way to get the box. However, the ICU team was concerned that he was not improving. His sodium level was falling, and it was feared that he might soon lose decision-making capacity. It became clear in our conversations that Mr. C's desire to have everything done arose both from concrete goals that had shifted (from a book to revising a will) and his need to have a bit more time to come to grips with what had happened to him. Recognizing this, I first confirmed that, for the time being, he still preferred aggressive life support. He nodded yes. I then asked if we had his permission to shift the focus of his care to comfort from life prolongation only if he were "to become unable to meaningfully interact with his environment, and reversal of this state was thought unlikely," as I documented in the chart. Of course, I did not use these words with him. I said something like, "If you get to the point where you are seriously ill and dying and have no idea what is going on, and if it looks like the docs can't get you back to your current condition, do we have your permission to switch gears from working to prolong your life to exclusively focusing on your comfort with no effort to prolong your life? This would include stopping life support." He clearly nodded yes. Because of the communication barrier caused by his intubation, I asked the question in other ways and confirmed his understanding of what I had proposed. This conversation was witnessed. This "advance, advance directive" (on top of his current advance directive for maximal support) describing a not-unlikely scenario, made sense in that his desire to continue life support was linked to explicit goals that he wanted to accomplish. If he were to become unable to accomplish such goals, then there would be little point to continue life support. When this conversation (and possible story line) was conveyed to the ICU, they were much relieved, as this addressed an issue of tension in their story line.

The box was found, and Mr. C got some time to come to grips. It looked as if he might be "weanable" from the ventilator, but the ICU team felt they needed to understand before extubation whether they should reintubate him if medically required following extubation. As their story lines came together, the ICU team was able to discuss this with Mr. C, and after a few days he consented to extubation without reintubation and a transition to comfort care only. He was successfully extubated and moved to hospice, where he died peacefully two days later.

In reading the following descriptions of communication skills, the reader is advised to keep in mind that such discrete skills will be most effective if they are employed within a much larger context of human relations and storytelling. And, as with any skill, they require practice, practice, practice.

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.