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The Patient's Story

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Mr R is a 74-year-old, married, retired professional who immigrated to the United States in the 1950s. He has New York Heart Association (NYHA) class II to III heart failure due to idiopathic cardiomyopathy and type 2 diabetes mellitus. At the age of 62 years, Mr R told his primary care physician that he could no longer sleep horizontally. His physician referred Mr R to Dr J, a cardiologist who diagnosed him as having a nonischemic dilated cardiomyopathy with an ejection fraction below 35%. Dr J initiated therapy with an angiotensin-converting enzyme (ACE) inhibitor, a diuretic, and digoxin. Mr R's clinical symptoms improved. When Mr R returned to Dr J's care 8 years later, digoxin treatment was stopped and carvedilol added. One year later he returned for evaluation with more severe symptoms and had an ejection fraction of 19%. Mr R now had NYHA class III to IV symptoms, resting tachycardia, Cheyne-Stokes respirations, limited energy, weight loss, and poor glycemic control. Dr J increased Mr R's ACE-I dose and instituted a home monitoring system through which a nurse could adjust diuretics by telephone.

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Dr J told Mr R that she was concerned that he was not doing all that he could to take care of himself. He responded that he was not sure he wanted to continue the intensive monitoring and medication regimen required for optimal management. Dr J then raised the option of hospice. Shortly after this discussion, Mr R came to a shared medical appointment with other heart failure patients and declared that he was not depressed, had accepted what could happen, and wanted to enroll in hospice. At that point, even minimal activity caused symptoms, despite treatment with benazepril, carvedilol, bumetanide, and digoxin. Mr R agreed to a do-not-attempt-resuscitation order. In hospice, Mr R began adhering fully to his medication, diet, and self-monitoring regimens and his symptoms improved. After several months he was discharged from hospice. Mr R can now walk for 30 minutes on level ground. He has no pedal edema. He continues to take his medicines, has kept his DNR order, and follows up regularly with Dr J.

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Perspectives

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Mr and Mrs R and Dr J were interviewed by a Perspectives editor.

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MR R: I have a degree in computer science. I worked for IBM for 35 years. I retired in 1987, but I continued working for IBM even after I retired, as a part-time worker in the same outfit. I worked 4 years more, then I completely quit. I went to see Dr J because I had a cough…and had trouble recovering. So, my family doctor asked, "What happened?" I said, "I can't really sleep or lay horizontal." He told me that I should be looked at by a cardiologist, so I started seeing Dr J. The diagnosis of myocardiopathy was done by Dr J actually, in 1991. ...

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