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The diagnostic and healing qualities of story: goals of care.

Recently, I was asked to see a woman in her 80s for a goals-of-care discussion in a cardiovascular intensive care unit. She had experienced a myocardial infarction and had been offered coronary artery bypass grafting. In addition to her coronary artery disease, she had chronic kidney disease and type 2 diabetes mellitus. The consulting cardiovascular surgeon had quoted her a 20% perioperative risk of death. She was unsure how to proceed. As a palliative care consultant, I would help guide her forward using a shared decisionmaking model. The need for a goals-of-care discussion is a common reason to seek palliative care consultation. Often these encounters involve end-of-life issues; however, increasingly they involve elderly patients with a large symptom burden and multiple medical problems that are not necessarily life limiting in the short term. A skilled physician will bring experience and training in communication to such encounters, seeking to understand the patient’s values and preferences while offering information about prognosis and recommendations, when appropriate. Responding appropriately to emotion, diplomatically but clearly delivering important and possibly unwanted or bad news, and using a shared decision-making model are all part of her or his repertoire. In the present scenario, my patient became frustrated when conveying her multiple medical problems. An empathic response I used to help build partnership with her was “we are going to work through this together.” Though much has been written about communication in health care, very little of it describes how to conduct a goals-of-care conversation. The most common template suggested is the “ask-tell-ask” method: discern the patient’s understanding of their medical condition, tell them your understanding, and then ask them for questions and a summary of your discussion with them. I agree with the ask-tell-ask method and use it routinely, but I believe that a foundation must be established before the first “ask.” The physician must understand the patient’s story. We cannot align clinical realities with therapeutic possibilities without knowing the stories of those we are asked to help. Where and how did they grow up? How do they perceive illness and suffering? What are their values, beliefs, hopes, and fears? None of this is new to our profession. Sir William Osler said that physicians should “care more particularly for the individual patient than for the special features of the disease.”1(p93) Roter et al2 studied distinct communication patterns of primary care physicians and found that most physician communication was based on a biomedical model, whereas patients were most satisfied with psychosocial communication. Patients reported that psychosocial communication fostered a relationship of partnership and support. Beyond illness and health, fully understanding our patients’ stories through compassionate listening creates the first connection in the patient-physician bond. The ensuing interpersonal relationship helps to strengthen trust, linking us in ways found only in the narrative. Listening to our patient’s stories is a sign that conveys our appreciation of each one as a unique human being.3 The sharing of narratives and listening with reflection and empathy can in and of themselves be healing.4 How did I proceed with my patient who was contemplating cardiac surgery? First, I listened to her story: She was recently widowed after almost 70 years of marriage. She lived alone in the farmhouse where she was born, grew up, and spent most of her adult life. Her faith was integral to her being. She did not fear death, but leaving the farm and losing her independence were anathema to her. When I evaluated her medically, I saw that she was doing well, looked much younger than I had anticipated she would, and was free of chest pain. She wanted to go home. Finally, I explained that while I could not predict her perioperative course, any complications that resulted in more than a few days in the intensive care unit would jeopardize her independence. Together we decided that she would go home and revisit her decision if further problems arose. At last followup, several months later, she was living and functioning independently at home. The next time you talk to your patient about goals of care, try listening to their story first. How do you do this? I will often say something like “I’ve reviewed your medical record and talked with your doctors, but before we talk about your medical condition, tell me a little bit about yourself.” You might be surprised how little time it takes, how much information you will glean, the connection you will make, and the trust you will build.