1. Chinn, Peggy L. RN, PhD, FAAN

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Chronic illness is a fact of life for many people, but, ironically, the medical system remains ill-prepared to address the experience. For centuries pundits and poets have turned their pens to speculate about causes, to provide a window into understanding the experience. But with the dramatic rise in the incidence of chronic illness, many people now have stories to tell and commonsense wisdom to share about what to do and how to cope. In my own experiences related to coping with chronic illness, I keep asking recurrent rhetorical questions that will not go away, and I think some of the questions deserve consideration in efforts to shape a future for nursing and health care.


First, I wonder, why in the face of clear inability to "cure" a disease do nurses and other medical care providers continue to move within a frame of reference oriented toward cure? I am not the first to ask this question, and so it seems timely to begin to ponder some responses. As a "why" question, some of the first responses seem quite obvious. They don't know what else to do. They have been taught to seek cure at all cost. Patients want cures. However, my experience suggests that actually many do know what else to do, and many patients state clearly and eloquently their realization that cure is not likely to be in their future. To me, the forces that keep many nurses and medical care workers trapped in a frame of reference of cure probably run much deeper, having to do with economic factors, political factors, and perhaps even self-concept and self-esteem issues. If you imagine that it is possible for skilled and intelligent humans to break free of deeply rooted forces that entrap them in a single idea, then the next question might be, What other frames of reference could care providers move toward?


A single definitive response to this question is neither possible nor desirable, and this is precisely why it is important to consider every possible response imaginable. One of the starting points needs to be the development of viable frameworks that keep the interests, the experience, and the voice of the person with chronic illness in the center. Here is a dramatic example: Consider what really happens if I approach the current cure-oriented system with the final decision that I do not want further diagnosis and treatment. Even if my care providers (read "cure" providers) have carefully explained all of the medical alternatives to me and have stated in words that they will support me whatever my decision, once I declare my decision, what do they offer me? Perhaps they offer me pain relief medication. Perhaps they offer me a referral to a social worker or hospice. But the fact that they essentially consider their job done is a blatant clue that cure is really what they are all about. So what more could they (we) do? If we move to a framework that keeps the person in the center, then I believe that one change in this scenario would be to not simply lay medical information at someone's feet, asking them to now decide. Instead, the discourse around options would include the patient's voice loudly and clearly.


If the patient's voice were central, the issues to be considered would not consist only, or even primarily, of medical options and prognostications. The issues would include the philosophic and ethical perspectives of the person, the person's story or narrative, what the person hopes for, who else figures most prominently in what the person is facing, and how all these people together see the situation. This would be a truly shared discourse, not a closed-door conference among the "professionals." Some medical care providers might not need or want to sustain this discourse, but as the discourse emerges, it would be apparent as to who needs to stay. The point would be that someone would stay. There would be a clear, logical, well-suited social and professional role for some care providers to stay. They would have important skills or talents to offer, some knowledge to share, and some healing modalities (not curing modalities) to contribute.


This shift requires a shift in framework-a shift that brings everyone's thinking to include an image of how to engage this type of discourse, what the discourse consists of, and who could and would stay given any number of possible discourses. There are several important clues in this issue of ANS (18:3) that can help to build these frameworks. I invite you, the reader, to carefully consider these ideas and to begin to consider how to break into a different kind of caring and healing. I am confident we can do it together.


Peggy L. Chinn, RN, PhD, FAAN