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Seeing the Big Picture: Communicating With Your Nephrologist About Goals and Expectations
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I recently attended the 2006 annual meeting of the American Society of Nephrology in San Diego, CA. On the flight there, I sat next to a gentleman who, despite having been on hemodialysis (HD) for a number of years, had competed in and completed a series of "Iron Man" marathon events, which require a combination of swimming, biking, and running. We spent much of the trip speaking about how he was able to accomplish this extraordinary achievement, considered by many as one of the most grueling sports events, despite his need for chronic HD. He attributed his success to several factors, including the use of L-carnitine on dialysis to improve his muscle strength and bulk, as well as strict compliance to his dialysis regimen, with an insistence on achieving an adequate dialysis dose. Mostly, though, he attributed his success and newfound fitness to a dogged determination to become a world-class athlete despite needing HD to help maintain his health. He further related that he received innumerable letters from nephrologists urging him not to risk embarking on such a demanding workout regimen. Nonetheless, he was assisted in a major way by one particular nephrologist, who, himself being a marathon runner, agreed to help advise him in his journey towards fitness. Food For Thought This discussion gave me much food for thought. How many times had I underestimated the goals of my own patients in deference to a well-meaning but stubborn insistence on conversing about subjects comprising what I considered "good dialysis," including treatment of anemia, indices of metabolic bone disease, nutritional parameters, and lab readings related to adequacy of dialysis? It is not that these aspects of dialysis treatment are not critically important. Indeed, my athletic flight-partner had stressed their importance in allowing him to feel well enough to train as hard as he did. However, in addition to reviewing hemoglobin, hematocrit, phosphorus, iron, and Kt/V results, had I remembered to ask questions which, for lack of a better term, may be said to relate to the "larger picture?" Had I asked my patients if they had any specific goals to which they aspired, whose achievement I might support by addressing additional aspects of therapy? Had I asked whether my patients had abandoned long-held plans when they found out they needed dialysis treatment, and whether it might be possible to resume progress towards fulfilling those ambitions? The Two "Traps" Perhaps I had fallen into one of two "traps" that occasionally ensnare even the most well-meaning nephrologists as they try to see the ever-growing number of dialysis patients under their care. The first is the "trap" of spending a disproportionate percentage of someone's time reviewing the quantitative rather than the less easily defined qualitative aspects of the patient's progress. It is, indeed, tempting to make sure that the patient's laboratory "numbers" are within recommended limits because of the certainty and precision associated with them. Less quantifiable elements of a patient's health can be more difficult to assess and sometimes elude consideration. The second "trap" is underestimating either my patients' actual capacities or their goals. After all, the process of "projection," or putting oneself in someone else's place, is perfectly human. In trying to be sympathetic, had I substituted my own lower expectations for my patients’ more ambitious plans and desires? Had I failed to remember that pursuing goals can motivate someone to better maintain health in order to perform those pleasurable or meaningful activities? Quality of Life Studies A fair body of medical literature has taught us that the quality of a person's life and functions he/she is able to perform may be highly predictive of such critical endpoints as survival and the frequency of hospitalization. One study examined data collected from 13,952 patients receiving care in units comprising a large dialysis chain. A wide variety of demographic and laboratory measures was collected on these patients as well as the results of a widely used questionnaire to measure patient functionality, known as the SF-36. The study demonstrated that, even when other disease status and important laboratory results were taken into account, the results of both the frequency of hospitalizations and patient survival were predicted.1 Other studies have come to a similar conclusion. Additional studies have demonstrated the value of specific therapies to improve indices of quality of life as measured on this validated scale. For example, a study showed that when L-carnitine was administered at the end of each dialysis session for six months, there was a significant improvement in the function of patients regarding their degree of bodily pain, the roles they could perform, and their perceived emotional health. The patients who were most physically compromised had the greatest overall improvement.2 Conclusion Perhaps my patients need to remind me to consider the larger picture. At least that would be one way to ensure that I don't forget to see the "forest for the trees." Specifically, patients might consider asking that their quality of life be assessed on a regular basis and that I discuss with them measures that might address specific deficiencies revealed by those questionnaires in the course of our regular patient reviews. Perhaps, most importantly, I need to know what it is that a patient considers to be his or her goal. What are the expectations of my patients, and how do they compare with my own expectations of them? Is there more that we can do together to allow patients to accomplish those goals? Free and open communication is an absolute necessity if patients are to achieve their goals and not fall prey to the trap of low expectations coming either from themselves or their caregivers. References 1. Lowrie, EG, Curtin, RB, LePain, N, and Schatell, D. Medical outcomes study short form-36: a consistent and powerful predictor of morbidity and mortality in dialysis patients.American Journal of Kidney Diseases 2003;41(6):1286-1292. 2. Steiber, AL, Davis, AT, Spry, L, Strong, J, Buss, ML, Ratkiewicz, MM, and Weatherspoon, LJ. Carnitine treatment improved quality-of-life measure in a sample of Midwestern hemodialysis patients. Journal of Parenteral and Enteral Nutrition 2006;30(1):10-15. About the Author Brian Schreiber, MD, has practiced nephrology since 1992 and is presently the Chief Medical Director of Dialysis Care in Wisconsin. He has a strong interest in the role of L-carnitine administration in improving patient functionality and serves as a consultant for Sigma Tau Pharmaceuticals.
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