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Chapter 41

### The Patient's Story

Twenty years ago, Dr B was a 50-year-old chair of the department of medicine at a major medical center when he first presented himself as a patient to Dr C, a junior cardiologist at the same center. Dr B had been on his daily jog up a steep hill when he developed severe fatigue and appeared at Dr C's department office saying "I'm sick." He was found to have complete atrioventricular block and had a pacemaker implanted. Although Dr C advised cardiac catheterization at the time, Dr B elected not to have the procedure because his noninvasive evaluation did not suggest coronary artery disease. He was asymptomatic for the next 5 years until he developed exertional dyspnea from congestive heart failure. Although Dr C again recommended cardiac catheterization, Dr B declined because his noninvasive study results remained negative for coronary disease, and he thought his risk for ischemic disease was low.

Dr B retired from his position as chairman but continued to work at the hospital in an administrative role. He was treated successfully for heart failure with an angiotensin-converting enzyme inhibitor and diuretic until he had a 10- to 15-second episode of unresponsiveness that was witnessed by Dr B's son, Dr B Jr, who was also a physician in the same hospital system. Although Dr B thought that he "just fell asleep" and that nothing serious was wrong, he agreed to undergo electrophysiologic evaluation at the behest of Drs C and B Jr. He was found to have inducible ventricular tachycardia and reluctantly he underwent placement of a bulky implantable cardiac defibrillator about which he complained bitterly because it tugged on his abdomen. Several years later Dr B had a potentially life-threatening arrhythmia that responded to overdrive pacing by his device.

Ten years ago, Dr B had developed polycythemia vera and referred himself to Dr H, a hematologist in the same department. Dr H treated Dr B conservatively with phlebotomy until Dr B became anemic and was diagnosed as having myelofibrosis. The subsequent clinical course was characterized by transfusion-dependent anemia, thrombocytopenia that did not respond to splenectomy, and progressive decline with cachexia and impaired mobility. Dr H allowed Dr B to determine his own transfusion schedule, even though Dr H worried that Dr B was waiting too long before he came in to receive blood. As the patient became more debilitated, Dr B Jr played an increasingly important role in his father's care, first accompanying his father to appointments, then advocating for additional consultations and evaluations, and eventually arranging for a splenectomy at an outside hospital. In the final months, Dr B began to experience peripheral edema and dyspnea on limited activity. Despite this, he continued to believe that his condition was going to improve, and he did not agree to establishing a do-not-resuscitate order or to turning off his implantable cardiac defibrillator. He accepted home hospice care, and his ...

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